The previous edition was published as Early Diagnosis and Therapy in Cerebral Palsy:

A Primer on Infant Developmental Problems, Second Edition, Revised and Expanded by

Alfred L. Scherzer and Ingrid Tscharnuter.

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Preface to the Third Edition

How surprising to recall that the first edition of Early Diagnosis and Therapy in
Cerebral Palsy was published in 1982. With the tools then available, clinical
focus on diagnosis of the very young child seems, in retrospect, more a hope
than a serious endeavor. Yet the volume was well received and led to a second
edition in 1990. The interim changes reflected more experience with the very
young child, and a shift in focus, away from the older established schools of
therapy toward more activist, invasive treatments.
Preparing the third edition has revealed truly remarkable changes. These
changes are reflected in a slight revision of the title. Fundamental research at the
molecular and cellular levels has advanced our understanding of mechanisms
involved in etiology and epidemiology. Developmental neurology has extended
our understanding of normal and abnormal behavior of the early preterm infant.
Screening and assessment have become more sophisticated, with an exponential
increase in the number of standardized instruments. The developmental screening
and evaluation process has matured considerably, with the availability of very
sensitive neuroradiologic tools. The accumulation of clinical experience with the
very young child has enabled a more directed approach to infant differential diag-
nosis.
Interventional therapy has also moved forward in many new and different
directions. Therapy has become oriented more toward a dynamical systems ap-
proach, emphasizing functional change, and maintaining physiological condition-
ing. Advances in the use of botulinum toxin, intrathecal baclofen, and selective
dorsal rhizotomy to reduce spasticity have taken center stage, without uniform

iii
iv Preface to the Third Edition

criteria for either individual or sequential application, or clear evidence of long-

term effects. Cerebral palsy has increasingly found itself a prime target for alter-
native treatments during this era.
Perhaps the most startling innovation in the decade since the last edition
has been advances in research. Outcomes research, including an indication of the
strength of evidence, has emerged in this period, and has just begun to influence
the field of cerebral palsy.
This third edition reflects these dramatic changes. We focus on the infant
from birth to three years in order to highlight specific concerns about diagnosis
and treatment in this group. This approach provides a model for dealing with
older age group categories as well. It is apparent that an understanding of how
to deal most effectively with the individual with cerebral palsy can best be ap-
proached through consideration of the options for the specific age group in-
volved.
The authors comprise a truly interdisciplinary group that has worked to
prepare this volume in much the same collaborative way that they would to treat
an infant with cerebral palsy. We all feel it is a privilege to bring forward these
important changes in the field at the start of a new century.

Alfred L. Scherzer
Preface to the Second Edition

The first edition of Early Diagnosis and Therapy in Cerebral Palsy, issued in
1982, sought to fill a major need for professionals in bringing together in one
source comprehensive information regarding diagnosis and management of the
very young child with cerebral palsy. At the same time, we hoped to demonstrate
how this framework might serve equally in developing programs for other types
of nonprogressive deficits with similar needs. That we succeeded in filling this
gap is well illustrated by the wide use of this text over the years and its continued
demand by a variety of professionals.
In the years since the original issue, there have been many new and exciting
developments in the field. Among these of major interest are new approaches
to early screening and identification, refinements in concepts and approaches to
therapy, considerations of alternative surgical approaches to treatment, and an
explosion in early intervention strategies increasingly based more on an educa-
tional than on a traditional medical model.
Clearly the time has come to incorporate these developments into this text
which has found much favor with our colleagues. We therefore take pleasure in
bringing forth this second edition with the hope that it will continue to fill the
needs of those devoted to the care of the handicapped child in this ever-changing
field.

Alfred L. Scherzer
Ingrid Tscharnuter

v
Preface to the First Edition

Until relatively recent years, cerebral palsy was primarily of professional interest
to a limited number of specialists dealing with specific aspects of treatment, such
as orthopedics and neurology. Indeed, these are the specialties which initially
shaped its definition and scope, dating from the days of Little and Freud. Children
came to attention late, when significant limitations in development and milestones
were noted, or severe orthopedic deficits were apparent. Intervention was fre-
quently concerned with static neurologic assessment, and treatment often exclu-
sively focused upon orthopedic surgery or a form of limited individual muscle
therapy. The approach was to deal with the specific functional deficits as they
appeared.
A much broader concept has subsequently emerged with the awareness
that cerebral palsy represents a major multidisciplinary developmental disorder
in which timely intervention by a variety of specialties is essential, and a coordi-
nated, directed approach is required. In addition, traditional therapy involving
individual muscle training has given way—mostly through clinical work with
cerebral palsy—to a more comprehensive and dynamic approach of movement
education which emphasizes the sensorimotor duality and is therefore conducive
to learning new motor skills. Clinical experience with cerebral palsy has also pro-
moted an expansion in the understanding of sensorimotor development. Today, ab-
normal motor behavior typically associated with cerebral palsy is seen as the out-
come of a long process of postural compensations to underlying deficits, such as
abnormal postural tonus or poor integration of postural reflexes. While early and
primary postural compensations consist of more subtle deviations from the norm,
motor skills building on these deviant patterns become more and more abnormal.
vii
viii Preface to the First Edition

Newer knowledge concerning infant development and recognition of early

common findings among infants with nonprogressive central nervous system
deficits has now placed cerebral palsy within the spectrum of major develop-
mental disabilities. In fact, its early identification and management presently
serve as a model for other types of multiply handicapping conditions.
Recent perinatal management and neonatal intensive care technologies
have further influenced the outlook for the child with potential disability. Children
are now surviving who until recently had an abysmal prognosis. Evidence indi-
cates a reduction, as well, in degree of disability, although an increase in severity
is suggested especially among those high-risk and low-birth-weight infants who
formerly did not survive. It seems likely that chronic developmental disorders in
children are destined to be a major and increasing concern for pediatrics of the
future.
It is in this setting that the concepts of early diagnosis and intervention
have taken root and a sizable literature has emerged. Current data are clinically
supportive of early intervention and the notion is intuitively appealing on the
basis of developmental theory. An explosive interest has been generated in this
field, yet there is a paucity of sources available for comprehensive reference and
documentation.
The present text attempts to fill this gap by putting into perspective the
evolution of cerebral palsy from a narrow focus as an orthopedic disability to a
broadly conceived developmental disorder. The emphasis is on the process of
developmental diagnosis, and current clinical approaches to evaluation, manage-
ment, and treatment are detailed. The need for continuous, systematic, and stan-
dardized re-evaluation is stressed. Suggestions are made for developing research
methods which will ultimately lead to establishing the effectiveness of any given
treatment approach.
It is hoped that the text will provide a useful guide for those who deal
with a wide variety of developmental disabilities in young children. Considerable
emphasis is placed on identifying early patterns of postural maladjustments so
that they can be corrected as far as possible before leading to more severe abnor-
malities. Its focus is to provide a more uniform and standardized approach to
diagnosis and treatment. Only in this way will it be possible to objectively evalu-
ate and guide individual therapy activities. Ultimately, this will greatly aid in the
much needed quest for research methodologies and firm data concerning the early
intervention process.

Alfred L. Scherzer
Ingrid Tscharnuter
Contents

Preface to the Third Edition iii

Preface to the Second Edition v
Preface to the First Edition vii
Contributors xi

1. History, Definition, and Classification of Cerebral Palsy 1

Alfred L. Scherzer

2. Trends in Etiology and Epidemiology of Cerebral Palsy: Impact of

Improved Survival of Very Low-Birth-Weight Infants 27
Vidya Bhushan Gupta

3. Diagnostic Approach to the Infant 49

Alfred L. Scherzer

4. Management and Treatment Planning for the Abnormally

Developing Child 95
Alfred L. Scherzer

5. Historical Perspective to Current Practice: Habilitative Services 121

Margaret J. Barry
ix
x Contents

6. Clinical Assessment of the Infant 139

Gay L. Girolami, Diane Fritts Ryan, and Judy M. Gardner

7. The Written Assessment, Treatment Planning, and Intervention

Strategies 185
Gay L. Girolami, Judy M. Gardner, and Diane Fritts Ryan

8. Treatment Implementation, Reassessment, and Documentation 207

Gay L. Girolami, Diane Fritts Ryan, and Judy M. Gardner

9. Assessment and Treatment Planning: A Case Study 229

Gay L. Girolami, Diane Fritts Ryan, and Judy M. Gardner

10. Research in Cerebral Palsy: Yesterday and Today 267

Charlene Butler

11. Evidence Tables and Reviews of Treatment Outcomes 285

Charlene Butler

12. Future Perspective on Cerebral Palsy 331

Alfred L. Scherzer, Charlene Butler, Vidya Bhushan Gupta,
Margaret J. Barry, Gay L. Girolami, Diane Fritts Ryan,
and Judy M. Gardner

Index 347
Contributors

Margaret J. Barry, P.T., M.S., P.C.S. Assistant Professor, Department of

Physical Therapy, Youngstown State University, Youngstown, Ohio

Charlene Butler, Ed.D. Health and Special Education Consultant, Seattle,

Washington

Judy M. Gardner, M.A., CCC-SLP Speech Pathologist, DuPage Easter Seals,

Villa Park, Illinois

Gay L. Girolami, P.T., M.S. Executive Director, Pathways Center, Glenview,

Illinois

Vidya Bhushan Gupta, M.D., M.P.H., F.A.A.P. Associate Professor of Clini-

cal Pediatrics, Metropolitan Hospital Center, New York Medical College, New
York, New York

Diane Fritts Ryan, OTR/L Occupational Therapist, DuPage Easter Seals,

Villa Park, Illinois

Alfred L. Scherzer, Ed.D., M.D., F.A.A.P. Clinical Professor Emeritus of Pe-

diatrics, Joan and Sanford I. Weill Medical College, Cornell University, New
York, New York

xi
1
History, Definition, and
Classification of Cerebral Palsy
Alfred L. Scherzer
Joan and Sanford I. Weill Medical College, Cornell University,
New York, New York

I. CEREBRAL PALSY IN HISTORICAL PERSPECTIVE

A. Ancient Egypt
As with most human phenomena, the earliest documentation of cerebral palsy
goes back to the ancient Egyptians. A tablet in the Temple in Memphis dating
from the fifth century BC memorializes its adult male caretaker who has charac-
teristics consistent with spastic right hemiplegia (1) (Fig.1). Features suggestive
of spastic diplegia during this period have also been uncovered by the French
neurologist, Charcot (2) (Fig. 2).

B. Elizabethan Times
Evidence that the condition was well known and perhaps not an uncommon oc-
currence in Elizabethan times is found in the work of Shakespeare. In Richard
III, Gloucester sets the stage for the tragedy by first identifying his feelings of
anger and frustration at being born prematurely, and describing the stigmata of
cerebral palsy (3):

I that am curtailed of this fair proportion,

Cheated of feature by dissembling Nature,
Deform’d, unfinish’d, sent before my time
Into this breathing world, scarce half made up,
And that so lamely and unfashionable
1
2 Scherzer

Figure 1 Caretaker of the Temple in Memphis (fifth century BC) with characteristics
of spastic right hemiplegia. (From Ref. 1.)

That dogs bark at me as I halt by them;

Why, I, in this weak piping time of peace,
Have no delight to pass away the time,
Unless to spy my shadow in the sun
And decant on mine own deformity;
(Act I, Scene I, lines 18–27)

C. The Nineteenth Century

While the physician Cazauvielh was the first European to study cerebral paralysis
scientifically (4), it was the French orthopedic surgeon, Delpech, who is credited
with expressing the earliest professional interest in cerebral palsy. His influence
History, Definition, and Classification of Cerebral Palsy 3

Figure 2 Cerebral palsy in ancient Egypt. A crippled individual with deformities of the
feet and atrophy of the extremities suggestive of spastic diplegia. From an ancient Egyptian
monument (Charcot and Richer, Les difformes et les malades dans l’art, 1889.)

later helped form the basis for modern treatment. Delpech was also concerned
with the deformities resulting from poliomyelitis. His description of the tendo-
achilles lengthening for equinus was the first published in the literature (5).
The procedure caught the interest of John Little, an English orthopedist,
who as a child had contracted polio, which left a residual equinus deformity (Fig.
3). Little consulted Delpech about the operation, but was discouraged by the
possibility of complicating infection. Instead, Little went to Germany, where the
procedure was also being performed by George Stromeyer (Fig. 4), and under-
went the operation. The successful correction of his lifelong deformity and the
care he received from Stromeyer made a deep impression on Little. He subse-
quently devoted himself to perfecting the procedure upon his return to England,
and later even named his third son in honor of his German colleague and mentor
(6).
4 Scherzer

Figure 3 W. John Little, English orthopedist whose studies of cerebral palsy provided
the first data on etiology.

As his practice developed (7), Little took an increasing interest in the cor-
rection of various deformities in children. He began to recognize many associated
with paralysis, and particularly with generalized spasticity (8). His definitive
work in 1861 (Fig. 5) drew upon 20 years of experience and documented possible
correlations between abnormality of pregnancy, labor, delivery, and subsequent
developmental deficit (Fig. 6) (9). Little reasoned that spasticity and deformity
were primarily due to cerebral hemorrhage and anoxia secondary to trauma of
History, Definition, and Classification of Cerebral Palsy 5

Figure 4 George Stromeyer (1804–1876) mentor and long-time colleague of W. John

Little. (From Ref. 6.)

the birth process (Fig. 7). Thus the entity later to be known as Little’s Disease
became established.
It is of interest that neuropathological autopsy evidence from children with
congenital hemiplegia appeared to be inconsistent at the time (10, 11), and clearly
was a factor in professional resistance to Little’s findings. Osler was eventually
able to show a neuroanatomical correlation of structural brain pathology and
spastic paralysis (12).
Interest in the condition spread to other medical disciplines. Gowers was
among the earliest physicians to support Little’s view that the etiology of cerebral
palsy was trauma to the brain at or near term (13). Sigmund Freud, initially a
practicing neurologist concerned with children, became greatly interested in the
relationship between nonprogressive neurological deficits and prematurity
6 Scherzer

Figure 5 Title page of Little’s historic paper in 1861. (From Ref. 9.)

Figure 6 Data from Little’s paper. (From Ref. 9.)

History, Definition, and Classification of Cerebral Palsy 7

Figure 7 Little related paralysis and spasticity in children to birth trauma (from Ref.
9). Caption under original photo reads: Contraction of adductors and flexors of lower
extremities. Left and weak. Both hands awkward. More paralytic than spastic. Born with
navel-string around neck. Asphyxia neonatorum one hour. See Case XLII.
8 Scherzer

Figure 8 Sigmund Freud studied nonprogressive neurological deficits and prematurity

in children.

(Fig. 8). He was well aware of Little’s causal conceptualization of birth abnormal-
ity and spastic paralysis, but placed greater etiological emphasis on intrauterine
developmental abnormality and less on birth trauma (14). To this day, Little’s
concern with birth trauma, and Freud’s emphasis on abnormal intrauterine
growth, remain as the two basic etiological pillars of congenital cerebral palsy
(15).
Recognition of an association between infection and the development of
permanent brain abnormality in previously normal children had also appeared
History, Definition, and Classification of Cerebral Palsy 9

about this time (16, 17). These studies provided the roots for a growing awareness
of acquired cerebral palsy as a discrete entity.

D. Pre World War II

The interest in identification and etiology of spastic conditions initiated in the
latter part of the nineteenth century maintained only limited momentum early
into the twentieth century. Specific approaches to treatment were also slow in
developing and had relatively little impact. Physical therapy made a start in the
United States through the work of Jennie Colby at Children’s Hospital in Boston
(18). Colby was a gymnast with an interest in massage therapy, which she chan-
neled into developing remedial exercises for a variety of paralytic conditions.
Her work was purely empirical and was incorporated into the program of the
newly emerging neurology clinic established by Crothers (19); new concepts in
psychology and mental health were also contributed by Elizabeth Lord (20).
Orthopedic surgery to correct specific deformities gained greater popu-
larity through the work of Stoffel, who early perfected neurectomy as a specific
procedure for managing contractures (21). Surgery was viewed enthusiastically
because of the easily measurable, immediate, and selected improvement. How-
ever, initial surgical benefit was often followed by disappointing long-term re-
sults.
As the psychological, developmental, neurological, and surgical consider-
ations became more apparent, a broader approach was needed. The impetus began
with Crothers and the interdisciplinary model in Boston. It was greatly expanded
upon by Winthrop Phelps, an orthopedist who became devoted to finding ways
to meet the needs of handicapped children, and who ultimately established a
comprehensive community rehabilitation center in Maryland (22). Phelps devel-
oped the multispecialty approach in the period before World War II, when interest
within the medical field was relatively scarce.

E. The Modern Era

The years immediately following World War II saw a merger of the extensive
experience gained during the conflict with rehabilitation medicine, and rapid mat-
uration in a variety of related medical specialties. Renewed interest in the handi-
capped child became apparent in a number of professional groups. Community
demands for action began to stir. The National Society for Crippled Children and
Adults (Easter Seal Society) established a Cerebral Palsy Division in 1946 with
a National Advisory Medical Council. This group of professionals soon recog-
nized the need for a forum for interdisciplinary information and exchange of
ideas.
It was in this setting, in 1947 that the American Academy for Cerebral Palsy
10 Scherzer

(AACP) was born in Chicago (23). Conceived as a multispecialty professional

organization to stimulate research and training in the field of the handicapped
child, the AACP joined together the major medical disciplines with related thera-
peutic, educational, and psychological services. The founders, all of whom were
in the original Easter Seal Group, had become convinced that only through a
combined effort could there be any hope of having measurable impact (Fig. 9).
The founders of the Academy included Phelps, who was the first president, Tem-
ple Fay (neurophysiologist), Bronson Crothers (neurologist), Meyer Perlstein (pe-
diatrician), George Deaver (physiatrist), and Earl Carlson (internist). What started
as a small forum for discussion and interprofessional education was the beginning
of a midcentury resurgence of interest and effort on behalf of the handicapped
child (24).
Demand for local services and facilities occurred simultaneously. A local
cerebral palsy committee was established in New York in 1948 (25). It sponsored
local hospital diagnostic services and provided treatment and educational pro-

Figure 9 The founders of the American Academy for Cerebral Palsy, 1947. Standing
(left to right). Dr. George Deaver (physiatrist), Dr. Earl Carlson (internist), Dr. Meyer
Perlstein (pediatrician). Seated (left to right): Dr. Bronson Crothers (neurologist), Dr. Win-
throp Phelps (orthopedist), Dr. Temple Fay (neurophysiologist).
History, Definition, and Classification of Cerebral Palsy 11

grams based largely on the model developed in Maryland by Phelps in the 1930s.
A New York State and, ultimately, a national United Cerebral Palsy Association
followed, with chapters subsequently developing throughout the United States
(26).
Of necessity, the emphasis of these programs was on diagnosis and treat-
ment of the child with established deficits, frequently with severe deformity of
a long-standing nature. Children were being seen with degrees of deformity com-
parable to Little’s reports of the previous century. The difference lay in awareness
that an approach much broader than orthopedics alone was needed. In addition
to the medical specialties, psychological services, and therapies, serious effort
was now made to provide appropriate special education, and supportive social
services programs. Services have subsequently developed in a multitude of com-
munity clinics and agencies for children with all kinds of developmental prob-
lems, and identification of affected individuals has become more efficient. There
has also been an increasing trend away from a rehabilitative to a ‘‘habilitative’’’
approach. The aim is to employ whatever means are necessary to bring a child
to a level of maximum potential in all areas of development, and particularly to
ensure functional independence as an individual.
Technological developments in perinatal care starting from the late 1960s
and early 1970s (27) have given further impetus to this concept. Improved obstet-
rical management of the high-risk mother is now widely available and comple-
ments a system of intensive neonatal care aimed at reducing mortality signifi-
cantly and lower morbidity from neurological and developmental deficit. A
significantly greater number of infants formerly classified as ‘‘at risk’’ are now
surviving, and more effective methods of early identification of neurological ab-
normality enhance this trend. Although still imperfect in many respects, the pres-
ent system of care in the western world has generally ‘‘caught up’’ with the late
case of the untreated child having multiple deficits. In this respect, the goals of
the 1950s to treat those with existing definitive handicaps are being met. As in
the management of many medical conditions, the initial emphasis and interest
lie with the most obvious and severe forms of the condition. As these become
treated and greater understanding of cause is approached, emphasis will be placed
on more subtle forms and, finally, on earlier diagnosis and treatment. So it is
with cerebral palsy as we enter a new century.
Contributions from the areas of developmental psychology and neurology,
and the experience of transdisciplinary methods with very young children, have
also become particularly influential (28). A parallel and logical outcome is the
development of early interventional treatment. The data on the effect of early
intervention have been emerging since the 1970s (29) and infants are now increas-
ingly being referred as a standard procedure of care.
In little more than 100 years there has been a virtual revolution in concept
and thought concerning cerebral palsy. Conceived initially as an orthopedic defi-
12 Scherzer

cit with a neurological basis, it has come to be recognized as a multihandicapping

condition requiring the attention of many specialties and services. More impor-
tantly, cerebral palsy is currently seen as a major disorder in development, which
emerges as the child grows, and requires very early identification and manage-
ment. Thus, what had been approached initially and for many years largely from
an orthopedic perspective has emerged as the prototype of nonprogressive devel-
opmental disability. This has facilitated a better understanding in management
of the full range of infant developmental problems.
Recognition of this broader concept was given in 1977 when the AACP
officially became the American Academy for Cerebral Palsy and Developmental
Medicine (AACPDM) (30). Little’s early concern with physical deformity alone
has thus expanded, at last, to an appreciation of the full range of developmental
disabilities in the affected child.

II. TOWARD A DEFINITION OF CEREBRAL PALSY

Confusion continues to exist concerning the term cerebral palsy and its generally
accepted meaning. Cerebral palsy refers to a nonprogressive central nervous sys-
tem deficit. The lesion may be in single or multiple locations of the brain, re-
sulting in definite motor and some degree of sensory abnormality, as well as
other associated disabilities. It occurs as a result of in utero factors or events at
the time of labor and delivery (congenital cerebral palsy), or a variety of factors
in the early developing years (acquired cerebral palsy). A well-established esti-
mate of case distribution suggests 85% for the congenital form and 15% for the
acquired type (31). Burgess was the first to make use of the term ‘‘cerebral palsy’’
in 1888 (32). Soon after it appeared in the English literature by Osler (12) and
Sachs and Peterson (16); in France it was used by Brissaud (33), and in Germany
by Rosenberg (34) and Freud (35). Phelps was the major popularizer of the term
in the United States. In conjunction with Phelps’ work in developing a compre-
hensive treatment program, cerebral palsy came to be known as the major nonpro-
gressive motor deficit occurring in children (36).
The AACPDM and the United Cerebral Palsy Associations have both rein-
forced the neurodevelopmental aspects of the definition (37). Confusion of terms
and overlap with other nonprogressive central nervous system (CNS) disorders
may be present. The distinction in cerebral palsy is that it is a static brain lesion
resulting in motor deficit with associated handicaps. The primary motor nature
of the condition provides a clear distinction from other static encephalopathies
such as mental retardation syndromes, organic brain deficits, attention deficit/
hyperactivity disorders, and the pervasive developmental disorders.
That the motor features of cerebral palsy may change with development is
a well-recognized phenomenon, and is reflected in the following definition pro-
History, Definition, and Classification of Cerebral Palsy 13

posed at the 1990 international meeting on epidemiology held in Brioni, Yugosla-

via: ‘‘. . . an umbrella term covering a group of non-progressive, but often chang-
ing, motor impairment syndromes secondary to lesions or anomalies of the brain
arising in the early stages of its development’’ (38).

III. CLASSIFICATION OF CEREBRAL PALSY

A. Motor Types
The type of motor deficit in cerebral palsy may take several forms. Neuroanatomi-
cal association with the clinical syndrome may be highly varied and differs with
maturity of the fetus or infant at the time of insult (39). The spastic variety is
most common and generally correlates with a fixed lesion in the motor portion
of the cerebral cortex.
The dystonic form, commonly referred to as athetoid cerebral palsy, reflects
involvement in the extrapyramidal system. Frequently there is intermittent ten-
sion of trunk or extremities and a variety of uninhibited movement patterns,
which sometimes have been the basis for confusion in classification. The Dysto-
nia Medical Research Foundation has attempted to clarify and standardize use
of the term, but does not specifically deal with the movement disorder that has
a developmental etiology (40).
Pathological correlation with nonprogressive ataxia relates variably to a
cerebellar pathways lesion, but is often uncertain (41). Abnormalities of cerebel-
lar function are frequently associated with other disturbances of the CNS (42).
Mixed types are now increasingly diagnosed. These may include combina-
tions of spasticity with dystonia or ataxia. Indeed, the concept that a single and
discrete focus of abnormality is found in most cases of cerebral palsy has been
seriously questioned (43). Nevertheless, the generally accepted clinical practice
is to identify the predominant type that is exhibited.
Rigidity is a form previously identified fairly commonly, but it may have
been confused with a severe degree of tension dystonia. It may possibly represent
a severe decerebrate lesion.

B. Distribution
The clinical neurological lesion has variable distribution. Table 1 lists descriptive
terms relating to distribution in common use.

C. Severity
Severity must also be considered as a basis for description and a guide for progno-
sis and treatment. About one-third of patients have generally been considered to
14 Scherzer

Table 1 Distribution of Cerebral Palsy Types

Location Description

Monoplegia One extremity

Hemiplegia Upper and lower extremity on one side
Paraplegia Both lowers
Diplegia Quadriplegia with mild upper in-
volvement
Quadriplegia Equal involvement of uppers and
lowers

be equally distributed among the mild, moderate, and severely involved catego-
ries. A review of severity in relation to etiology is found in Chapter 2.
Clinical judgment of severity in the very young infant can be difficult, but
the Gross Motor Function Classification System developed by Palisano et al.
provides helpful guidelines for children under and above age 2 (44). A description
of the levels involved in the classification system is given in the Appendix.

D. Approaches to Classification
Type, distribution, and severity are essential components of the cerebral palsy
diagnosis. They give meaning and direction to treatment and management of the
patient, and provide a more uniform understanding of the problem than simply
referring to a static motor encephalopathy. They also provide some estimate of
prognosis.
Classification and uniformity of diagnostic description has always been
controversial (45). Rosenberg was the first to tackle the problem (34). He included
categories of generalized rigidity, paraplegic rigidity, bilateral spastic hemiplegia,
bilateral athetosis, chorioform diplegia, and atypical forms. Freud and Rie (35)
made a slight refinement, giving more recognition to athetosis. Categories in-
cluded spastic hemiplegia, generalized rigidity, paraplegic rigidity, paraplegic
paralysis, double hemiplegia, generalized chorea, and bilateral athetosis. These
were the only classifications available until the mid-twentieth century and were
largely the basis for understanding and describing the lesions up to that time.
The modern era in classification dates from the work of Fay in 1950 (46),
who attempted to correlate the clinical expression of the motor deficit with ana-
tomical location and pathophysiology; adding his understanding of subtypes,
served to encumber the system beyond practical use (Table 2).
Phelps greatly refined these categories into a simpler and more practical
clinical scheme (47). He included, flaccid paralysis, spasticity, rigidity, tremor,
History, Definition, and Classification of Cerebral Palsy 15

Table 2 Cerebral Palsy Classification of Fay (1950)

1. Spastic paralysis–cerebral: nonspastic paralysis; atonic type.

2. Athetosis–midbrain: Deafness, tension; nontension; hemiplegia; tremor; cerebral re-
lease, emotional release, head, neck, arm; shudder-type; rotary-type, dystonia-type,
flail-type.
3. Tremors and rigidities–basal ganglia: Parkinsonism types; decerebrate types.
4. Ataxia: Cerebellar, kinesthetic.
5. High spinal: Spastic-medulla.
6. Mixed: Diffuse.
Source: Ref. 46.

athetosis, and ataxia. This system was much more workable and useful just at
the time of resurgence of interest and community activity in the field. Phelps’
approach was slightly expanded and further refined by Perlstein (48), while Balf
and Ingram emphasized body parts most involved (49). In their clasic study of
cerebral palsy, Crothers and Payne preferred to divide cases into spastic, ‘‘extra-
pyramidal,’’ and mixed types. The extrapyramidal category included athetosis,
chorea, dystonia, and ballismus (50).
The influence of these investigators was strong in the subsequent classifica-
tion prepared by Minear for the American Academy for Cerebral Palsy. Distribu-
tion and degree of involvement, extent of treatment required, as well as motor
types were also included for the first time (51) (Table 3).
Some ambiguity exists in several of the Minear motor types (e.g., the dis-
tinction between tremor athetosis and a separate tremor category). How does
tremor differ from ataxia? Is there a physiological equivalent of atonia or is this
part of a developmental stage from which one of the other types ultimately

Table 3 Cerebral Palsy Classifi-

cation of Minear (1956)

Spasticity
Athetosis tension; nontension, dys-
tonia, tremor
Rigidity
Ataxia
Tremor
Atonia (rare)
Mixed
Unclassified
Source: Ref. 51.
16 Scherzer

Table 4 Brioni Cerebral Palsy Classifi-

cation (1990)

Spastic Hemiplegia
Tetraplegia
Diplegia
Ataxic Diplegia
Congenital (simple)
Dyskinetic Mainly choreoathetotic
Mainly dystonic
Source: Ref. 38.

emerges? Are some motor patterns unclassifiable because they are transient de-
velopmental features that change to other forms or eventually disappear?
The relevancy of these questions becomes apparent when we consider that
the Minear classification was developed at a time when cerebral palsy was diag-
nosed late and solely on the recognition of a fixed motor deficit type. The develop-
mental characteristics of the condition, and especially the emerging nature of the
neurological lesion, were not then well appreciated. Depending upon the age at
which a child was initially seen, the motor features would be variably evident.
At the 1990 Brioni meeting, the classification in Table 4 was proposed for
simplicity and to enable epidemiological reporting (38).
Classifications suggested previously by Badell-Ribera (52) and more re-
cently by Yokochi (53) have emphasized both degree of motor impairment and
ambulatory status, but likewise have not dealt with the developing expression of
the motor lesion in cerebral palsy.
Identification and referral of the infant who is not developing normally now
provides an opportunity for very early diagnosis and management. A modern
classification of cerebral palsy must consider its early developing signs and recog-
nition of the emerging motor type. Such a classification could help to dispel
confusion regarding diagnosis and provide better communication among the vari-
ous professionals dealing with the child. An attempt is made to develop a basis
for such an approach in Chapter 3.

IV. ASSOCIATED CONDITIONS

While the motor deficit in cerebral palsy is predominant, a number of associated

conditions are frequently present and must be considered in the overall develop-
mental needs of the affected child. These include abnormalities of vision, hearing
and speech, seizure disorders, learning disabilities among the vast majority, and
History, Definition, and Classification of Cerebral Palsy 17

frequent social, emotional, and interfamily problems (54). Mental retardation is

not necessarily present with cerebral palsy, but is more likely to be associated
with severe spasticity (see Chapter 2). In addition, a recent finding suggests the
presence of unique growth patterns, with evidence of poor linear growth in this
population that requires further investigation (55). In every sense, therefore, the
term ‘‘cerebral palsy’’ conveys the concept of a broadly based, multiply handi-
capping condition.

V. STATIC ENCEPHALOPATHY AND DEVELOPMENTAL

ABNORMALITY

At the outset, it is essential to put into perspective the diagnostic implications of

the term ‘‘cerebral palsy.’’ It clearly represents a fixed, primarily motor, condition
within the brain with variable etiology that is a prior event rather than an ongoing
phenomenon (see Chapter 2). This distinguishes cerebral palsy from other central
nervous system conditions that are associated with a continuing or progressive
pathology, with loss of milestones acquired previously (56), and identifies cere-
bral palsy as a static encephalopathy. Moreover, the predominant motor deficit

Figure 10 Cerebral palsy in the continuum of other static encephalopathies. (From Ref.
56.)
18 Scherzer

of cerebral palsy should be seen as part of a continuum within the spectrum of

other nonprogressive developmental disabilities. These range from the cognitive
mental retardation syndromes, behavioral attention deficit disorders and learning
disabilities, through the mixed deficit pervasive developmental disorders.
Capute conceptualizes this spectrum as a ‘‘developmental triangle’’ linking
and interconnecting each of these overlapping disorders (Fig. 10). In this view,
the consequence of fixed central nervous system pathology (static encephalopa-
thy) can give rise to a broad range of deficits in the motor, cognitive, and behav-
ioral areas, either individually or in some combination. In the motor area, for
example, abnormalities could range from the incoordination and clumsiness seen
in attention deficit disorder to frank motor impairment in cerebral palsy. There-
fore, anyone dealing specifically with diagnosis, management, and treatment of
cerebral palsy, must keep in mind its predominant motor features and associated
handicaps, yet be fully aware of and have the necessary clinical sophistication
to deal with this entire range of nonprogressive developmental disabilities (57).
While the aberrant central nervous system in these conditions is the basis
for delayed or abnormal developmental progress, it is essential to identify the
primary impairment (cognitive, behavioral, or motor) that is outside the accept-
able range and is the specific developmental abnormality characteristic of the
child. These concepts are of great importance in understanding the developmental
nature of the static encephalopathies such as cerebral palsy, and hence, their early
identification (Chapter 3).

VI. CEREBRAL PALSY THROUGH THE LIFE SPAN

A. Birth to Three Years
The period from birth through 3 years is associated with rapid physical growth,
neurological maturation, and social integration. This is a crucial time for clarify-
ing the delays in development that have been experienced, beginning to deal
with problems in daily management, and providing needed early interventional
treatment. It is during these years that the discrete motor deficit in cerebral palsy
makes its appearance and becomes a part of the growing child. But the extent
and degree of motor deficit may still change with later growth, either becoming
less pronounced or showing more permanent involvement. In order to avoid
unnecessary or detrimental procedures, the range of applicable therapeutic ap-
proaches in this age group should therefore be conservative essentially and nonin-
vasive while growth occurs.

B. Pre-School (Four to Six Years)

The preschooler will have a clearly recognizable motor deficit pattern whose
degree and extent will be a major influence on development. Associated and
History, Definition, and Classification of Cerebral Palsy 19

concomitant problems in vision, hearing and speech, cognition and learning, be-
havior, and seizure status will become apparent. The need for mobility and social
integration as well as the requirements associated with beginning formal school-
ing will all be demanding. The range of therapeutic choices that can be considered
by professionals will also greatly broaden.

C. School Age
The child will be living with his unique motor problems and associated deficits
while becoming integrated into the school situation. Family and social interaction
will broaden, along with the beginnings of independence. Ongoing treatment will
play an important part in prevention of further (secondary) deficits and main-
taining attained levels of function.

D. Adolescence
Striving toward independence, and sexual maturity and the need for conformity
and social acceptance are all variably experienced by the child with cerebral palsy
during this period. Residual motor or other limitations will affect advancement
in school and direction for later vocational development. Mental health needs
may be a major requirement, while there is often simultaneous resistance to any
suggested therapy modality. The transition to adulthood presents many special
problems especially where there is limited agency contact (58), particularly for
the young adult with cerebral palsy compared to those with other chronic condi-
tions (59).

E. Adult
Attaining of adult status brings with it a wide range of levels of independence,
from residential supervision (60) to complete integration into the adult commu-
nity. The former may require treatment services to maintain function (61), while
the latter may be able to manage with little or no additional therapy or services.
Secondary effects of cerebral palsy may play an important role (62). General
health maintenance issues, including appropriate fitness activities, employment,
social and family status, and social acceptance will all be of increasing impor-
tance.

F. Senior Adult
Advancing age often brings with it accelerated motor deterioration in the person
with cerebral palsy (63). Pathogenesis is not entirely clear and more data are
needed on this now emerging population to better understand these changes.
20 Scherzer

Health-care issues and secondary effects of cerebral palsy become of increasing

importance (64), particularly for women (65). Resumption of active therapy ser-
vices in some form may be required in order to maintain/regain function. All of
the social, emotional, and economic effects of reduction or loss of independence
will come into play, possibly necessitating additional supportive and mental
health services.
Cerebral palsy has specific implications in each of these life stages. It needs
to be viewed specifically within each of them in order to focus on differing re-
quirements for identification, care, and management. While cerebral palsy is a
lifelong condition, the changes at a given age are crucial to understanding the
unique age effects that will require professional assistance. In this sense, cerebral
palsy should be considered as a grouping of age-related conditions, each with its
own set of problems and challenges for management.

VII. THE CHALLENGE TO FOCUS ON THE INFANT

The child from birth to 3 years presents a unique combination of circumstances.

On the one hand, the brain is in a rapid state of differentiation and maturation.
Identification of specific abnormalities to account for the developmental delays
may be elusive, and diagnosis becomes a major challenge. On the other hand,
clinical experience indicates that very early initiation of assistance in daily man-
agement of the child and in providing a treatment regimen is crucial. Tailoring
both management and treatment to the unique situation of an infant whose diagno-
sis may still be emerging presents another major challenge. These challenges
offer opportunities to help the child to function and develop in better contact
with the environment, to enhance the dynamics of intrafamily relationships, and
perhaps to lessen or even prevent extensive deficits in the future. For these rea-
sons, the special needs of the infant and young child from birth to 3 will be the
focus of the chapters that follow.

VIII. CURRENT TRENDS

In contrast with Little’s day, we are now fortunate enough to have available
techniques for early identification and tools for early intervention of the infant
with cerebral palsy. Even those with severe involvement may be expected to
develop some independent function and eventually make their contribution to
society. This progress has become possible as the traditional, primarily orthopedic
approach in cerebral palsy has increasingly expanded to include multiple profes-
sionals who must deal with the array of needs of the child who has developmental
disabilities. Concurrent early intervention special education programs up to age
History, Definition, and Classification of Cerebral Palsy 21

3 have expanded both resources and the range of modalities that can now be
offered. And extension to preschool and school services that now offer inclusion
and mainstream programs enables increasing numbers of these children to be-
come successful in finding a place within the community. For those who require
continued supervision and assistance, opportunities are expanding for meaningful
independence within a residential setting.
The advent of managed care within the United States health system has
become pervasive, just as the interdisciplinary approach to the child with develop-
mental disabilities is reaching universal acceptance. It remains to be seen whether
the economics of providing health care under this system will work to the advan-
tage of this coordinated model of management.

APPENDIX: GROSS MOTOR FUNCTION CLASSIFICATION

SYSTEM [44]
Level I
Before 2nd birthday: Infants move in and out of sitting and floor sit with both
hands free to manipulate objects. Infants crawl on hands and knees, pull to stand
and take steps holding on to furniture. Infants walk between 18 months and 2
years of age without the need for any assistive mobility device.
From 2nd to 4th birthday: Children floor sit with both hands free to manipu-
late objects. Movements in and out of floor sitting and standing are performed
without adult assistance. Children walk as the preferred method of mobility with-
out the need for any assistive mobility device.

Level II
Before 2nd birthday: Infants maintain floor sitting but may need to use their hands
for support to maintain balance. Infants creep on their stomach or crawl on hands
and knees. Infants may pull to stand and take steps holding on to furniture.
From 2nd to 4th birthday: Children floor sit but may have difficulty with
balance when both hands are free to manipulate objects. Movements in and out
of sitting are performed with adult assistance. Children pull to stand on a stable
surface. Children crawl on hands and knees with a reciprocal pattern, cruise hold-
ing on to furniture and walk using an assistive mobility device as preferred meth-
ods of mobility.

Level III
Before 2nd birthday: Infants maintain floor sitting when the low back is sup-
ported. Infants roll and creep forward on their stomachs.
22 Scherzer

From 2nd to 4th birthday: Children maintain floor sitting often by ‘‘W-
sitting’’ (sitting between flexed and internally rotated hips and knees) and may
require adult assistance to assume sitting. Children creep on their stomach or
crawl on hands and knees (often without reciprocal leg movements) as their pri-
mary methods of self-mobility. Children may pull to stand on a table surface and
cruise short distances. Children may walk short distances indoors using an as-
sistive mobility device and adult assistance for steering and turning.

Level IV
Before 2nd birthday: Infants have head control but trunk support is required for
floor sitting. Infants can roll to supine and may roll to prone.
From age 2nd to 4th birthday: Children floor sit when placed, but are unable
to maintain alignment and balance without use of their hands for support. Chil-
dren frequently require adaptive equipment for sitting and standing. Self-mobility
for short distances (within a room) is achieved through rolling, creeping on stom-
ach, or crawling on hands and knees without reciprocal leg movement.

Level V
Before 2nd birthday: Physical impairments limit voluntary control of movement.
Infants are unable to maintain antigravity head and trunk postures in prone and
sitting. Infants require adult assistance to roll.
From age 2: Physical impairments restrict voluntary control of movement
and the ability to maintain antigravity head and trunk postures. All areas of motor
function are limited. Functional limitations in sitting and standing are not fully
compensated for through the use of adaptive equipment and assistive technology.

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2
Trends in Etiology and
Epidemiology of Cerebral Palsy
Impact of Improved Survival of
Very Low-Birth-Weight Infants

Vidya Bhushan Gupta

Metropolitan Hospital Center, New York Medical College,
New York, New York

I. ETIOLOGY OF CEREBRAL PALSY

Although relatively less frequent than mental retardation and epilepsy, cerebral
palsy (CP) occupies a preeminent position among developmental disabilities be-
cause of the debate that surrounds its causation. The complexity of factors etio-
logically associated with CP, and with its various motor types, was apparent even
to Little. He recognized, for example, that spastic paraplegia or diplegia was
generally associated with a preterm but normal delivery, whereas spastic quadri-
plegia was more often found after an abnormal term delivery (1). Much of the
confusion about the etiology of CP is due to the fallacy of attributing CP to
various antecedents and conditions discovered in a group of CP patients, without
establishing causality (2). A condition should be considered causal only if it is
found consistently more often in those who have CP than in those who do not,
and if CP occurs consistently more often in those who are exposed to the condi-
tion than in those who are not. To be causal, an association should be strong and
biologically plausible. Even if an association is strong, plausible, and consistent,
it may only be a link in a chain of events. CP, like many other diseases, is often
multifactorial in origin with various factors working in tandem or simultaneously
to cause it. This preamble to the following discussion about the etiology of CP

27
28 Gupta

is meant to caution clinicians against rushing to attribute CP to an adverse peri-

natal event, without examining the prenatal antecedents of the case.

A. Congenital Cerebral Palsy

Congenital CP refers to cases in which the etiology is traced to intrauterine, natal,
or perinatal factors and was estimated by Perlstein to include some 85% of all
cases (3). The most important associations of congenital CP are discussed below.

1. Prematurity
About 40% of children with CP are either born prematurely or have low birth
weight (⬍2500 g). The prevalence of CP among very low-birth weight (VLBW)
infants (⬍1500 g) is 40 to 100 times higher than in normal weight infants (4,
5), and VLBW infants, who constitute only 0.68% of newborn survivors, contrib-
ute up to 28% of children with CP (6).
Among children with low birth weight, gestational age is more important
than growth retardation. It is not clear which factors increase the risk of CP among
preterm infants—factors that result in preterm birth or medical complications that
frequently occur in premature infants because of their increased vulnerability to
pathophysiological disturbances? The following pathogenetic mechanisms have
been suggested.
1. Prenatal antecedents cause early brain damage, which, in turn, predis-
poses to preterm delivery.
2. Prenatal antecedents independently cause brain damage and preterm
birth.
3. Prenatal antecedents cause preterm birth, which, in turn, causes dis-
abling sequelae.
4. Prenatal antecedents cause preterm birth, which results in homeostatic
disequilibrium at birth that results in brain damage, and which, in turn,
causes disabling sequelae.
The underlying basis of most neurodevelopmental sequelae in the preterm
infant is white matter damage, collectively called perinatal leukoencephalopathy
(7). This term encompasses germinal matrix hemorrhage (GMH), periventricular
hemorrhage (PVH), intraventricular hemorrhage (IVH), periventricular hemor-
rhagic infarction, and periventricular leukomalacia (PVL). Preterm infants are
prone to GMH, PVH, and IVH because their cerebral circulation is sensitive to
changes of blood pressure (pressure-passive) and they lack supporting glia in
their germinal matrix. Large GMH/IVH, in turn, causes obstruction of the termi-
nal veins, resulting in hemorrhagic infarction (8). Periventricular hemorrhagic
Trends in Etiology and Epidemiology 29

infarctions are asymmetric and generally occur on the same side as a large GMH/
IVH. Periventricular leukomalacia or multifocal necrosis in the periventricular
white matter, on the other hand, occurs due to ischemic necrosis in the end and
border zones of long penetrating arteries. Paneth et al. have reported that white
matter damage in the preterm infant is not confined to the periventricular area
but may extend more widely into the subcortex and beyond (9), and is character-
ized by loss of oligodendrocytes with an increase in hypertrophic astrocytes (10).
Loss of oligodendrocytes affects nerve cell growth, which, in turn, impairs my-
elination. Conditions such as respiratory distress syndrome, apnea, hypotension,
infection, and patent ductus arteriosus can disturb cerebral blood flow because
of its pressure-passive nature in preterm infants, resulting in hypoxia, acidosis,
and ischemic necrosis (10). Periventricular leukomalacia may be mediated by
cytokines, tumor necrosis factor–alpha, interleukin-6, and free radicals that are
released as a result of hypoxia and ischemia. A schematic diagram describing
the pathogenesis of CP in the preterm infant is given in figure 1.
The principal diagnostic tool to diagnose periventricular and intraventricu-
lar lesions in the preterm infant is cranial ultrasound. Transient periventricular
densities, called flares, are associated with an 8 to 10% risk of CP, while IVH
with ventricular dilatation (grade III IVH) and IVH with periventricular hemor-
rhage (grade IV IVH) have a risk of 60 to 70% (11). Though echolucent areas
(darker areas with few echoes) are less common, they are more ominous. Echolu-
cent lesions detected by ultrasonography (Fig. 2) are associated with risk of CP
estimated to be as high as 100% (12). The diffuse white matter damage mentioned
above is usually undetected by cranial ultrasound during life, except as distortion
of the contours of cerebral ventricles or ventriculomegaly.

Figure 1 Events leading to cerebral palsy in preterm infant.

30 Gupta

Figure 2 Ultrasound of a preterm infant with hypoxic-ischemic injury showing resolv-

ing IVH and porencephalic cyst on the right side and periventricular cystic leukomalacia
on the left side. (Courtesy Syed Hossain, MD.)

Magnetic resonance imaging (MRI) is more sensitive in detecting white

matter damage. In MRI, the child is placed in a magnetic field and changes in
alignment of protons induced by the applied magnetic impulses are monitored
and used to create images. The images are obtained under three conditions—T1,
T2, and proton density (Fig. 3).
Although the pathophysiology of brain damage in preterm infants is better
understood now, the causes of prematurity in preterm infants are still not fully
understood. In multivariate analysis, the predictors of low birth weight are: low
birth weight of the last infant born to the mother, fetal malformations, cigarette
smoking, and placental inflammation or infection. Maternal and placental infec-
tion is related independently to preterm birth and to neurological damage leading
to CP. Because of our poor understanding of the causes of prematurity, the inci-
dence of preterm birth has not decreased despite advances in obstetric surveil-
lance.

2. Birth Asphyxia
The relationship between asphyxia and developmental disabilities, especially CP,
has intrigued the medical and lay communities since 1861, when William John
Trends in Etiology and Epidemiology 31

Figure 3 MRI (T1 weighted image) of a preterm infant at 14 months of age showing
periventricular leukomalacia. (Courtesy Syed Hossain, MD.)

Little stated in his famous paper to the Royal Obstetrical Society of London
‘‘abnormal parturition, besides ending in death or recovery, not infrequently had
a . . . third termination’’ in long-term disability (13). Birth asphyxia occurs when
the organ of gas exchange (placenta or lungs), fails at the time of birth, resulting
in oxygen deprivation (hypoxia), hypercarbia, and metabolic acidosis. Asphyxia
leads to alterations in cerebral blood flow in a homeostatic attempt to maintain
circulation to more vital areas. There is no damage if blood flow to the brain is
maintained. If, on the other hand, blood flow is compromised (ischemia), depriv-
ing oxygen supply, cell death results due to release of free radicals and excitotoxic
amino acids such as glutamate (Fig. 4).
If asphyxia is severe and total, an uncommon occurrence—involvement of
the thalamus, brainstem and basal ganglia—occurs, with relative sparing of the
cerebral cortex. If asphyxia is prolonged and partial, as is more common, bilateral
parasagittal watershed injury occurs in term infants and bilateral periventricular
end and border zone injury occurs in preterm infants. The neuoropathological
32 Gupta

Figure 4 Events leading to cerebral palsy in term infant.

picture of human asphyxia is similar to that seen in the rhesus monkey model
of prolonged partial asphyxia (14), suggesting that most cases of human asphyxia
have their onset in the prenatal period rather than being acute events triggered
by labor and delivery. The asphyxial event has to be extreme and prolonged to
result in neurological damage, and the neurological sequelae due to birth asphyxia
are usually not limited to the motor system, but often include mental retardation
and epilepsy as well.
It is difficult to estimate the exact incidence of birth asphyxia, because
there is no universally accepted measure of this condition. It is estimated that
the incidence of birth asphyxia ranges from about 1 to 2 per 1000, in full-term
infants, to as much as 60% in extremely low-birth-weight infants. Between 10
to 60% of preterm neonates with asphyxia expire depending upon their gestation,
while most full term infants survive (15, 16). Although survival after birth as-
phyxia is related to gestational age, the incidence of neurological impairment is
similar in preterm and term infants (15). Based upon epidemiological data, about
12 to 20% of CP cases are related to intrapartum asphyxia (17, 18).
Despite evidence of a modest association between perinatal asphyxia and
CP, it is difficult to establish that this association is causal in a particular child.
Most cases of CP occur in infants who have no history of adverse perinatal events,
and most infants who experience birth asphyxia recover without CP (19). Predic-
tion is complicated by the absence of a universally accepted measure of birth
asphyxia. Biochemical indices, such as low umbilical vein blood pH and buffer
base, correlate poorly with Apgar scores (20, 21) and do not predict CP. Emer-
gency cesarean sections, which are done solely because of abnormal biochemical
indices, often deliver infants with no sign of birth asphyxia. Apgar scores are
not a specific measure of birth asphyxia (22) because nonasphyxial conditions,
such as maternal analgesia and anesthesia or infection, can also depress Apgar
scores. Apgar scores have poor predictive validity and low sensitivity and speci-
Trends in Etiology and Epidemiology 33

ficity (23). In the National Collaborative Perinatal Project (NCPP), only about
12% of surviving children with Apgar scores of 0 to 3 developed CP (19). Fifty-
five percent of cases of CP in the NCPP occurred in infants with 1-min Apgar
scores of 7 or higher (19). Infants who suffer oxygen deprivation in the perinatal
period show abnormal neurological signs within the first 12 h to the first week
of birth. These signs, though not specific to asphyxial brain damage, are called
hypoxic-ischemic encephalopathy (HIE) (24, 25) and are, by far, the best pre-
dictors of neurodevelopmental sequelae. Mild HIE, characterized by irritability,
jitteriness, and increased tendon reflexes, carries little risk of subsequent handi-
cap. Moderate to severe HIE, manifesting as seizures, altered state of conscious-
ness, and abnormalities of posture, reflexes, and feeding and respiratory function,
on the other hand, is associated with a 20 to 55% risk of long-term neurological
sequelae (26). Hypoxic-ischemic encephalopathy is a better predictor of subse-
quent handicap than low Apgar scores or biochemical changes alone.
While individual indices of asphyxia are poor predictors of CP, infants with
a constellation of factors, such as low Apgar scores for 20 min or more, moderate
to severe HIE, HIE that persists for over 1 week, and severe acidosis, are more
likely to have adverse neurological outcome. Neonatal seizures occurring in the
context of prolonged depression are one of the strongest predictors of CP. Various
neuroimaging techniques, such as ultrasound, CAT scan, and MRI, can be used
to assess the extent of asphyxial brain damage and to predict CP. Radiological
signs depend upon the maturity of brain, because asphyxial cerebrovascular dis-
ease affects the term and preterm infant differently (27). MRI appears to be the
most sensitive technique to diagnose asphyxial brain damage in humans at pres-
ent, with T2 prolongation (high signal) from edema occurring within 12 to 18 h
of injury, and T1 shortening (high signal) and T2 shortening (low signal) ap-
pearing within 3 to 6 days of injury. While T2 prolongation is transient, T1 and
T2 shortening predict permanent damage (28). The new techniques, such as diffu-
sion and perfusion MRIs, MR spectroscopy, and near-infrared spectroscopy, hold
more promise in detecting asphyxial brain damage in the infant (29).
The exact cause or causes of birth asphyxia are unknown. Freud, in 1875,
had argued that Little had the causal sequence wrong—that babies may have had
difficult birth because they were abnormal rather than the reverse (30). Many
cases of birth asphyxia have prenatal antecedents that either directly damage the
brain or make an infant more vulnerable to intrapartum stress leading to birth
asphyxia, which in turn may cause CP. In the NCPP, of the 21% of children with
CP, more than half had other characteristics, most often congenital malforma-
tions, that may have contributed to asphyxia, leading to CP. In a study by Hag-
berg, mothers of 42% of children who had birth asphyxia experienced bleeding
during pregnancy, infarction of placenta, toxemia, or maternal diabetes. Most of
these conditions limit supply of nutrients and oxygen to the fetus, a situation
34 Gupta

collectively called fetal deprivation of supply (31). In Hagberg’s series, 62% of

CP children who had history of fetal deprivation of supply had birth asphyxia
(31).
Most cases of asphyxia and brain damage putatively caused by birth as-
phyxia are not preventable by intrapartum obstetric or neonatal interventions.
Obstetricians use a number of techniques to prevent birth asphyxia and to detect
fetal distress early, but most of the techniques have poor sensitivity and specific-
ity. Intermittent auscultation to monitor fetal heart rate is a procedure of poor
reliability (intraobserver agreement) and validity; thus it is of little use in pre-
venting intrapartum stress. Continuous electronic monitoring does not show a
major improvement over intermittent auscultation (32). Scalp vein pH is a very
poor predictor of birth asphyxia. With an Apgar score of less than 7 at 1 min as
the outcome measure, fetal heart rate monitoring plus fetal scalp sampling is 32%
sensitive, and has a false positive and false negative rate of 43.6% and 19.9%,
respectively (33). While the rates of electronic monitoring and cesarean sections
have gone up significantly in recent years, the prevalence of CP has not declined.
In a case-control study of the outcome in cases with and without adequate re-
sponse to fetal distress, Niswander et al. found that 98% of the babies whose
mothers received suboptimal care for fetal distress survived without CP (34).
The aim of treating a child who has suffered birth asphyxia is to limit brain
damage. At present the treatment of birth asphyxia is not standardized and ranges
from no therapy to sedation, anticonvulsants, fluid restriction, and osmotic diure-
sis. Though retrospective studies had suggested that magnesium sulfate adminis-
tered to the mother for eclampsia during pregnancy was associated with decreased
incidence of CP, prospective studies have failed to confirm this hypothesis (35).
Hopefully, we shall have a rational approach to limit asphyxial brain damage in
the future because studies are underway in animals to prevent formation and
elimination of free radicals and excitatory amino acids.
While birth asphyxia has become less common as a cause of CP in devel-
oped countries, it continues to be an important cause of perinatal mortality and
neurodevelopmental sequelae in developing countries, where it is often prolonged
and severe due to suboptimal obstetric care; many cases are preventable (36). A
community-based study in Zimbabwe found that a preventable factor was present
in 76% of cases of perinatal asphyxia (37).

3. Other Perinatal Factors

Hyperbilirubinemia of the newborn due to Rh factor, ABO, or other blood group
incompatibility, was formerly a major factor in the development of kernicterus,
milder forms of athetosis, or mixed forms of cerebral palsy. Its impact has been
greatly reduced by improved methods of early identification, exchange transfu-
sions, and, above all, the preventive use of anti-Rh (D) immune globulin to im-
Trends in Etiology and Epidemiology 35

munize the mother immediately after her first pregnancy (38). Neonatal jaundice
due to sepsis or physiological immaturity of the liver may still require careful
attention.
Infection during the perinatal period may be significant, particularly if it
leads to sepsis or meningitis. Herpes simplex encephalitis in the perinatal period
can cause devastating brain damage resulting in cerebral palsy as well as mental
retardation.

4. Prenatal Factors
Prenatal factors that have the potential of causing CP are present in a significant
number of children with CP. As many as 70% of term infants with CP have a
history of one or more adverse prenatal factors. In 30% of these cases, CP is
causally associated with these prenatal factors, giving credence to Freud’s view
that difficulties at birth and the subsequent neurological syndrome of CP is the
cart and not the horse in the causal sequence. Enamel hypoplasia has been noted
to occur more often in children with CP, suggesting a prenatal cause for CP
during the first trimester when enamel is formed (39). Foremost among the prena-
tal factors are maternal disorders that result in ‘‘fetal deprivation of supply,’’
such as bleeding during pregnancy, placental infarction, toxemia, and twinning.
According to Hagberg, about 30% of CP occurs in infants whose mothers had
history of fetal deprivation of supply (31). Williams et al. reported a seven time
higher relative risk of CP in twins as compared to their singleton counterparts,
even when controlled for low birth weight and prematurity (40). Regardless of
gestational age or birth weight, maternal prenatal conditions such as the general
health status of the mother, untreated medical conditions, use of recreational
drugs, alcohol, tobacco, and exposure to radiation are all known to have some
effect on fetal development, but the exact relation to cerebral palsy is not estab-
lished. Exposure to environmental toxins during pregnancy may be responsible
for a few cases of CP, as occurred during the epidemics of methylmercury and
fungicide poisoning in Japan and Iraq, respectively.
Certain endocrine problems during pregnancy have been reported to be
associated with a higher risk of cerebral palsy; for example, hyperthyroidism or
administration of thyroid hormones and estrogens during pregnancy (16). The
role of the thyroid is especially intriguing because transient hypothyroxinemia
of prematurity is a marker for neurodevelopmental problems, though its causal
role has not been established, and it is not clear if thyroxine treatment in the
neonatal period can prevent adverse outcome (41).
Maternal infections remain a major source of fetal central nervous system
pathology. The primary conditions of concern are congenital rubella, toxoplasmo-
sis, cytomegalovirus, and herpes. Each may be without serious or even noticeable
clinical manifestations during gestation. While congenital rubella has been con-
36 Gupta

trolled in the United States, it continues to be a problem in developing countries.

The latest on the list of possible congenital infections is the acquired immune
deficiency syndrome (AIDS). It is well established that vertical transmission of
HIV-1 virus frequently results in severe developmental disorders, including pri-
mary CNS motor conditions. Motor disorder in AIDS may progress so slowly
that it appears consistent with cerebral palsy (42). Maternal fever and chorioamni-
onitis are also associated with significantly higher risk of disabling CP in the
offspring (43). Maternal urinary tract infection has been linked to white matter
damage in the offspring (44). Grether at al. have hypothesized that brain injury
due to maternal infections is perhaps mediated by complement-induced injury to
oligodendria and neurons, with alteration of blood-brain barrier and coagulation
disorders that may result in clots, emboli, and bleeds. They reported significantly
higher levels of α-, β-, and γ-interferons and other biochemical indicators of
inflammation in 14 of 31 term infants with spastic diplegia (45).
Vascular factors have been implicated in the etiology of CP. Both arterial
and venous infarctions are known to cause cerebral palsy. Strokes can occur
in prenatal, natal, and postnatal periods and are associated with polycythemia,
neurocutaneous syndromes such as Sturge-Weber syndrome and neurofibro-
matosis, maternal cocaine abuse, congenital cyanotic heart disease, and coagulop-
athies, dehydration, and meningitis (46). Factor V Leiden mutation may be an
important cause of in utero cerebrovascular disease and hemiplegic cerebral palsy
(47). If a vascular lesion occurs early during gestation, dysgenesis occurs with
destruction and a cavity lined with dysplastic gray matter results. These cavities
are called dysgenetic porencephaly or schizencephaly. If the lesion occurs late
during gestation, a well-formed cavity with minimal glial reaction, called por-
encephaly, is formed. After 30 weeks of gestation, cavities with internal septation
due to glial response result, a process called encephalomalacia (46).
CNS malformations, such as hydrocephalus and encephalocele, can result
in permanent motor sequelae, depending on whether or not they are surgically
corrected at the right time or not. Congenital brain malformations, such as ab-
sence of corpus callosum, isolated lissenencephaly, Miller-Dieker syndrome,
polymicrogyria, schizencephaly, and cerebellar malformations, may be associ-
ated with cerebral palsy, but children with these congenital malformations often
have seizures and intellectual deficits as well (46). Cerebral palsy associated with
Sturge-Weber syndrome, neurofibromatosis, and other phakomatoses may be due
to brain malformations or due to vascular accidents. The distinction between a
brain malformation and brain damage is not clear cut because the same insult
can result in brain malformation if it occurs earlier during morphogenesis and
damage if it occurs late.
In view of the importance of prenatal factors in the etiology of CP one
should not rush to blame events surrounding birth for CP. In most cases, it may
be more prudent simply to state the factors elicited in history without stating that
Trends in Etiology and Epidemiology 37

they, indeed, caused CP. Even if prenatal factors are causally associated with
CP, in most cases these factors are not preventable.

5. Genetic Cerebral Palsy

Examples of multiple cases within a family and a higher incidence of cerebral
palsy in offspring of consanguineous marriage suggest that there maybe a heredi-
tary basis for cerebral palsy in a few cases (48). Genetically determined cases
of spastic paraplegia, generalized athetosis, and ataxia are well documented (49).
Glutaric acidemia, type 1, is an is important genetic cause of cerebral palsy in
the Amish population of Pennsylvania, presenting as static encephalopathy once
the children are past their infantile period of vulnerability to metabolic toxins
(50). Metabolic conditions, such as ketoadipic aciduria, unclassified mitochon-
drial disease, and milder or later onset variants of classical lysosomal disorders
and peroxisomal disorders, though strictly not CP, should also be considered in
differential diagnosis of CP because these conditions may progress so slowly that
they appear static (51).

6. Preconceptional Factors
In epidemiological studies, long intervals between menses, an unusually short or
long interval since the previous pregnancy, and history of fetal wastage have
been reported to be associated with higher risk of cerebral palsy (52).

B. Acquired Cerebral Palsy

Cerebral palsy is thought to be caused by a defect or lesion of the developing
brain (53), but the period during which the brain continues to develop after birth
is uncertain. Therefore, there is no consensus about the age until which CP can
be acquired. While those interested in identifying antenatal and perinatal causes
of CP consider only cases occurring between conception and the first month of
life as CP, others also include as CP cases that occur in children who were appar-
ently normal at birth but sustained brain damage during the first 2 years of life.
Infective and traumatic factors are important causes of brain damage during this
period. Among the infective cases, meningitis and encephalitis are the most im-
portant, with herpes simplex infection prevalent in the developed countries, and
bacterial meningitis, tubercular meningitis, viral encephalitis, especially measles
encephalitis, and cerebral malaria common in the developing countries. Trauma
is particularly common once the child begins to walk and develops independence
in the preschool period. Accidental causes include motor vehicle accidents, near
drowning, accidental choking, and acute life-threatening events. Unfortunately,
inflicted trauma in the form of shaken baby syndrome has become a frequent
cause in the United States. Other conditions that may cause permanent motor
38 Gupta

sequelae include late-onset or inadequately treated hydrocephalus, neoplastic in-

tracranial lesions that occur in the early developing years (54), intracranial hemor-
rhage due to an arteriovenous malformation, and cerebral infarction secondary
to an embolus from a cardiac lesion or thrombosis in sickle-cell anemia.
Data regarding the incidence of static intracranial lesions with permanent
residue that develop beyond the perinatal period are limited. Records of Perl-
stein’s cases suggest that approximately 15% of CP cases are acquired postnatally
(3). A report from Finland identified postnatal causes in 13 (19%) of 69 cases
(55). While most cases of congenital CP are not preventable, many of the postna-
tal cases of CP are.

II. EPIDEMIOLOGY OF CEREBRAL PALSY

Because of the probable role of perinatal factors in its causation (56), the fre-
quency of CP is measured as a rate per thousand live births and not per thousand
population alive at the time of diagnosis. This rate is called prevalence, not inci-
dence. It is difficult to compute incidence in CP because there is a considerable
gap of time between the onset of CP and its diagnosis, and a considerable number
of cases that die or are lost to follow-up before diagnosis are not counted.
Prevalence of cerebral palsy in the industrialized countries of the world
ranges from 2 to 2.5/1000 live births (Table 1).
Prevalence of CP in developing countries is believed to be higher than in
developed countries because of a higher incidence of severe birth asphyxia (65,
66) and higher incidence of low birth weight, but no population-based studies
are available to ascertain the true prevalence of cerebral palsy in developing coun-
tries.

Table 1 Prevalance of Cerebral Palsy in Population-

Based Studies in Developed Countries

Prevalence/1000
Country Study (Ref.) live births

Australia Stanley (57) 2.3

Canada Robertson et al. (58) 2.6
Ireland Dowding (59) 2.0
Finland Rikonen (60) 2.5
Norway Meberg (61) 2.1
Sweden Hagberg et al. (62) 2.4
UK Evans (63) 2.0
US Yeargin Allsop (64) 2.1
Trends in Etiology and Epidemiology 39

Cerebral palsy has been found to occur in all countries of the world and
in all ethnic groups (65, 66). The prevalence of CP is not related to ethnicity per
se, but is mediated by the prevalence of low birth weight, maternal and obstetric
factors, and consanguinity in an ethnic group. Although, in the United States,
the incidence of low birth weight among blacks is double that among whites, no
clear pattern of CP excess has been seen among blacks. Murphy et al. reported
higher prevalence of CP among blacks in Metropolitan Atlanta (67), but no dif-
ferences were reported by Haerer et al. from Mississippi (68). Similarly, no
differences between blacks and whites were reported by Emond et al. from
Britain (4).
The prevalence of cerebral palsy is higher among ethnic groups in whom
consanguineous marriage is common, such as Pakistani immigrants in England
and Saudi Arabians (65, 69).
Many studies report an excess of males among cases of cerebral palsy.
Males tend to be more severely affected and have more dysmorphic features, but
no explanation has been found for these findings, and, in fact, male predominance
in CP maybe diminishing (70).

A. Secular Trends in the Prevalence of Cerebral Palsy

Despite advances in obstetric and neonatal care, prevalence of cerebral palsy
has been rising in the industrialized countries since the mid-1970s. (6,59,60,71).
Hagberg et al. (62) reported rising prevalence of CP in western Sweden until the
late 1980s when the overall CP prevalence fell, but CP among preterm infants
increased. Although no change in the overall CP rates has been observed in Aus-
tralia, a significant upward trend in CP rates among VLBW infants has been
noted (57, 72). Similarly, in the counties of Merseyside and Cheshire in the
United Kingdom, there has been a threefold increase in the CP rate in VLBW
infant survivors in the 1980s, with most of the increase occurring in infants less
than 1000 g (6).

B. Cerebral Palsy and the Very Low Birth-Weight Infant

The increasing prevalence of CP in the developed countries seems to be due to
improved survival of VLBW infants in whom the prevalence of CP is very high
(73). Prior to intensive care, very few VLBW infants survived. Neonatal survival
for singleton white infants in the United States increased by 7100 %, from 6.5
to 461.2 per 1000 live births for those weighing 500 to 999 g, and 200%, from
422.6 to 845.9 per 1000 live births, for those weighing 1000 to 1499 g between
1960 and 1983 (74). These changes in mortality translate into more than a twofold
increase from 1960 to 1986 in the number of VLBW infants surviving the neona-
tal period. With continuing advances in neonatal care, the gestational age of via-
40 Gupta

bility is getting lower, and more extremely low birth weight (birthweight ⬍1000
g) and extremely extremely (also called micro) low-birth-weight infants (⬍750
g) are surviving. At one perinatal center in the United States, the survival of
infants with birth weights of 500 to 750 g increased from 23% during the period
from 1982 to 1988 to 43% during the period from 1990 to 1992. While none of
the children born at the gestation of 23 weeks survived in the 1982 to 1988 cohort,
7% of children with gestation of 23 weeks survived in 1990 to 1992 cohort, and
the survival of infants with gestation of 24 weeks went up from 16% to 40%
during the same period (75). In view of the above trends in newborn survival,
the National Institute of Child Health and Human Development concluded, after
a multicenter study, that obstetricians should be willing to perform cesarean sec-
tions at above 800 g or 26 weeks gestational age for fetal indications (76).
The improved survival of extremely low-birth-weight infants has not been
accompanied by an increase in medical and neurodevelopmental sequelae in the
survivors. Escobar et al. reported little variation in prevalence of CP in VLBW
survivors since 1960 (77). At Rainbow Babies Hospital in Cleveland, outcomes
among surviving extemely low birth weight infants at 20 months of age did not
change appreciably from the 1982 to 1988 period to the 1990 to 1992 period,
despite a twofold increase in survival (75). Lorenz et al. reviewed the English
language studies published since 1970, reporting on mortality and disability in
infants born at or before 26 weeks gestation, with birth weights less than 800 g,
and concluded that the prevalence of major neurodevelopmental disabilities has
not changed among survivors over time (78).
Despite the stable incidence of disability in VLBW infants, their improved
survival alone is likely to increase CP prevalence, because the prevalence of CP
in infants below 1500 g is 77/1000 live births, 60 times the prevalence in infants
more than 2500 g (1.3/1000) and 9 times the prevalence in infants 1501 to 2500 g
(8.5/1000) (57, 79). That this is indeed happening is supported by the ‘‘changing
panorama of CP.’’ The relative proportion of low-birth-weight infants among CP
has increased; low-birth-weight infants now contribute 40 to 50 % of patients
with CP (6, 57) as compared to 30 to 35% in the past (6, 80).
With an increasing proportion of CP occurring among very low birth weight
infants, there has been a change in the clinical type of CP as well. Diplegic CP
is becoming more common because of improving survival of VLBW infants,
while the dyskinetic type of CP is decreasing due to decreased incidence of biliru-
bin encephalopathy. In Sweden, diplegia and hemiplegia constitute 45 and 34%
of all cases, respectively, with quadriplegia ranking a distant third (9% of cases)
(62); in England, quadriplegia, hemiplegia, and diplegia constitute 36%, 32%,
and 22% of cases, respectively (6). Dyskinetic CP which includes dystonic, athe-
toid, choreiform, and ataxic types of CP, accounts for about 13% to 16% of
cases. About 20% of cases have mixed features of choreathetosis and spasticity.
Spasticity is the most frequent motor finding, occurring in about 60% of children.
Trends in Etiology and Epidemiology 41

The hypotonic form of CP, not accepted by some to be CP at all (81), is the least
common, occurring in about 1% of cases.

C. Cerebral Palsy and Associated Abnormalities

Cerebral palsy is often associated with various other disabling conditions, a few
of which are described below.

1. Mental Retardation (MR)

Even though 25 to 30% of CP cases have severe intellectual impairment defined
as IQ less than 50 (82, 83), as many as 50% of children with CP have normal
intelligence. The rest have mild MR (IQ ⱖ50–70). No recent studies of the preva-
lence of MR in children with CP are available, but it is unlikely that the preva-
lence of MR in CP has increased. Intelligence is often spared in spastic diplegia,
the form of CP whose prevalence has increased with increasing survival of
VLBW infants.

2. Epilepsy
From 25 to 45% of children with CP have epilepsy (84, 85). Epilepsy is most
common in spastic hemiplegia, followed closely by spastic quadriplegia, and least
commonly in spastic diplegia. Children with MR and spastic quadriplegia are
more likely to have seizures than other children with CP. Partial epilepsy is the
most frequently seen form of epilepsy in spastic hemiplegia, while major motor
epilepsy and West syndrome are common in spastic quadriplegia. Seizures tend
to occur earlier in spastic quadriplegia, at a median age of 6 months (85), than
in spastic hemiplegia, in which they occur at a median age of 4 years (85). Epi-
lepsy in patients with CP is more difficult to control because of associated brain
lesions (86). For example, infantile hydrocephalus occurred in 26% of preterm
children with CP in a population-based study in Sweden (62).

3. Sensory Impairments
CP is often associated with visual and hearing impairments. Eighteen percent
of preterm and 14% of full-term infants with CP had various degrees of visual
impairment in a Swedish cohort (62). The association of hearing impairment with
cerebral palsy is much less common and is mediated by prematurity (87) and to
a much lesser extent by perinatal asphyxia (88). Of 547 preterm infants of 34
weeks gestational age or less, born between 1987 and 1991 in Lausanne, Switzer-
land, 1.46% developed bilateral sensorineural hearing loss (89). In a register of
hearing-impaired children born in a region of the United Kingdom between 1984
and 1988, low-birth-weight infants were found to be at a significantly increased
42 Gupta

risk for hearing impairment, with an odds ratio of 4.5 rising to 9.6 for birth-
weight less than 1500 g (87).

4. Behavior Problems
Behavior problems are common in children with CP. Using the National Health
Interview Survey, Child Health Supplement for 1981 and 1988, McDermott et
al. reported that parent-reported behavior problems were five times more likely
in children with CP (25.5%) compared with children having no known health
problems (5.4%). These problems included dependency, oppositional behavior,
and hyperactivity (90).

III. SUMMARY

Cerebral palsy rose to prominence during this century as a metaphor for abnormal
labor and delivery, and a ticket to colossal jury awards for damages, because of
its putative association with birth asphyxia. However, many well-done studies,
such as the NCPP, have established that birth asphyxia makes a minor contribu-
tion to the causation of CP, and many children with birth asphyxia have prenatal
antecedents that cannot be prevented. Of the potentially asphyxiating perinatal
conditions, such as abruptio placentae, placenta previa, prolapsed cord, cord com-
pression, and tight nuchal cord, only tight nuchal cord was found to be signifi-
cantly associated with CP in term infants (91). Failure of the advances in obstetric
care and the ever escalating rate of cesarean section to decrease the prevalence
of CP is a further testimony to the lack of a strong causal association between
CP and birth asphyxia. While the advances in obstetric and neonatal care have
failed to decrease the prevalence of CP due to birth asphyxia, there has been an
amazing improvement in the survival of very low- and extremely low-birth-
weight infants. As a corollary to the improved survival of VLBW infants in whom
the prevalence of CP is higher than in full-term infants, the absolute number of
low-birth-weight infants with CP has increased. This trend is likely to continue
until we understand the mechanism of brain injury in the preterm infant and are
able to devise interventions to address these processes. Until such time, we will
have to contend with a higher prevalence of cerebral palsy, preterm survivors
with spastic diplegia forming the majority of them.

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3
Diagnostic Approach to the Infant

Alfred L. Scherzer
Joan and Sanford I. Weill Medical College, Cornell University,
New York, New York

I. THE CONCEPT OF NORMAL NEUROLOGICAL

MATURATION

The work of Gesell and others firmly established both uniformity and the concept
of variation in the normal developmental sequence of children (1–3). Acquain-
tance with this basic framework is essential to a working understanding of the
growth process. More importantly, it is the cornerstone upon which identification
of abnormal development rests. Underlying this framework is an orderly matura-
tional sequence of the entire central nervous system (CNS).
Review of current data regarding structural neurological differentiation is
helpful in understanding the complex process at work in earliest development.
There is an extremely active and ongoing sequence of neurological maturation
following birth that is continuous with in utero development (4). Massive devel-
opment of neurons, axons, and dendrites takes place during this period, as the
neurochemicals increasingly enable electrical transmission of signals between
synapses (5). By age 2, the number of synapses is said to reach adult levels; by
age 3, the brain has twice the number of adult synapses. This number remains
high through age 10, then gradually becomes reduced to adult levels in adoles-
cence (6). Myelination, or development of the nerve insulation sheath, is also an
active, continuous process that takes up to at least the first two years of life
before completion (7). Neuromaturation thus has enormous potential for growth
throughout the preadult years.
Initially, growth of nerve pathways, interconnections, and cell fibers pro-
ceeds actively to the trunk and extremities, while brain stem connections affecting
49
50 Scherzer

tone and earliest spontaneous motor patterns remain predominant (8). Maturation
proceeds toward ‘‘higher’’ centers, ultimately reaching the cortex with indepen-
dence in full voluntary control. However, some degree of voluntary movement
is present even in the neonate. Newborn spontaneous patterns of motor behavior,
previously considered to be infant reflexes, are viewed by Prechtl to occur endog-
enously through central pattern generators, rather than being reflex in nature (9).
As growth proceeds, the infantile primitive motor patterns give way to more
complex postural motor patterns and to mature voluntary behavior. Initial mass
behavior activity on an involuntary basis is replaced by individual responses un-
der voluntary control, and integration proceeds at the various levels of CNS activ-
ity. Postural tone, or the maintenance of the body in space, becomes integrated
simultaneously as part of the developmental process.
Complex general movements (GMs) that involve the head, trunk, arms, and
legs have been identified by 9 to 10 weeks of fetal life through the use of video
studies (10), and are said to persist up to 3 to 4 months post-term (11, 12). Earliest
preterm general movements are fluent, changing with age in range, variation, and
speed. The preterm GMs give rise to writhing GMs near term, with less trunk
involvement (13, 14). These give way to irregular fidgety GMs involving the
entire body by 2 months post-term, prior to their normal disappearance (15).
Motor maturation has traditionally been thought to be hierarchical in devel-
opment, proceeding in a predetermined cephalocaudal direction, with motor con-
trol of the head, neck, and trunk preceding extension of the trunk, ultimate weight
bearing, and walking. More recent data from longitudinal studies of infant kicking
(16), and postural control during reaching (17), among others, demonstrate that
infants are not preprogrammed for motor coordination and activity. Instead of the
predetermined concepts of the past, a dynamic systems approach is now generally
accepted in which there is individual self-organization of movement with inter-
action between tasks and environment over time. However, there is a need for
further evidence to support the theory.
Maturation of the normal central nervous system occurs simultaneously at
many different levels. Although there is an orderly sequence in development,
considerable variation is seen within individual children in achieving stages of
motor and intellectual achievement. Thus, a child’s intelligence may be consider-
ably ahead of his or her locomotion ability, yet ultimately development may reach
average levels. There is also a range of variation that exists among infants in
reaching established levels of neuromaturation (18).
Motor development should be seen as a succession of integrated milestones
leading to more complex and independent function (19). Each stage is interdepen-
dent and relates closely to progressive control of higher centers of the nervous
system and reduced influence of involuntary motor behavior patterns (20). Many
stages will develop simultaneously. Each milestone, therefore, is not necessarily
perfected before going on to the next (21). Also, a ‘‘competition of motor pat-
Diagnostic Approach to the Infant 51

terns’’ is suggested in which a child naturally practices new activities, with tem-
porary suppression of others, until learning is complete. Older and more estab-
lished activities may then be resumed and added (22).
Finally, the dynamic systems theory now emphasizes the influence of the
child’s tasks and the environment as factors beyond the nervous system that in-
fluence motor development (23). Obviously, any evaluation or assessment of the
infant must take account of these variables and their interaction. In turn, the
concept opens new approaches to influencing maturation through changing tasks
offered to the child as well as altering the environment (24).
Thus the infant is initially dominated by tone and early motor patterns
mediated through the brain stem, and by mass responses as physical and biochem-
ical growth of the nervous system proceeds. The orderly process simultaneously
leads to maturation of tone, gradual inhibition of earliest primitive motor patterns,
emergence of postural motor patterns, progression of developmental milestones,
and an increasing degree of voluntary behavior. Environmental influences will
have a profound effect on this process throughout (25, 26).
The challenge for those dealing with developmental problems in very
young children is to accurately assess and comprehend the significance of delay
that falls outside the limits of typical variability. Is it normal or pathological?
Knowledge of the normal orderly sequence of developmental achievement, and
patterns of integration of behavior, is the basis upon which possibly significant
deviation in maturation can be gauged. Appendix A includes a comprehensive
outline of developmental stages and normal motor milestones from birth to 3
years for detailed reference (27).

II. OVERVIEW OF ABNORMAL INFANT NEUROLOGICAL

DEVELOPMENT

Although the theme of development is one of a continuum with many variations

constantly under environmental influence (24), its physiological basis is exceed-
ingly complex. Any aberration of the central nervous system does not necessarily
coincide initially with distinct and observable focal motor dysfunction in the
developing infant. Instead, evidence of malformation or insult will generally be
apparent only in abnormalities of general movements, tone, patterns of motor
behavior, and developmental milestones.
General movements have been classified into ‘‘mildly abnormal’’ and
‘‘definitely abnormal’’ with the use of video and EMG recording (28). Mildly
abnormal GMs are said to lack fluency, while definitely abnormal GMs lack
all fluency, complexity, and variation (14). Strong correlation and specificity of
abnormal GMs and neurological abnormality increases by the third month post-
term (15).
52 Scherzer

Tone is often altered, with either excessive or diminished quality. This is

mediated through brain stem pathways and may well be an early indication of
brain stem malfunction (29). In particular, one may see a discrepancy between
proximal and distal tone, that is, between the trunk and extremities.
Alteration in appearance, intensity, or expression of primitive motor pat-
terns will occur (30). The normal course of early disappearance of primitive
motor patterns through inhibitive pathways will be affected, with either delay or
failure in the development of later postural motor patterns (31).
Developmental milestones will be delayed in progression, with prolonged
fixation at a given stage. The extent of abnormality will relate to the degree of
delay in brain stem and nerve pathway maturation. The nature of the total central
nervous system fixed pathology would directly affect both.
Motor abnormality appears relatively late in infant development, as nerve
pathways become more functional. This is a natural outcome of the selective
nerve growth process. Differential rates or order of appearance of motor deficit
are manifest. The abnormal motor features emerge as the damaged nervous sys-
tem matures. In cerebral palsy, for example, evidence of spasticity may be first
noted only at 7 to 9 months of age. Dystonia will not generally be apparent before
18 months and may be delayed beyond 2 years. Ataxia is frequently not manifest
before 30 months to 3 years. Identification of mixed motor features may be further
delayed while nervous system development progresses and relative dominance
of one motor form interchanges with another. Immature initial CNS development
may result in poor overall organizational ability of the infant, affecting irritability,
feeding, and sleeping, for example. These findings will ultimately need to be
distinguished from true specific sensory and motor deficits. In fact, transient neu-
rological deficits are common in such infants, and a long-term perspective on
progression in development is essential to achieve an accurate picture of develop-
mental status.

III. PREDICTION OF DEVELOPMENTAL ABNORMALITY

A. Physiological Screening
1. Biochemical
From time immemorial there have been concerns about ultimate development
of the newborn with signs of distress. Prediction of outcome based on clinical
experience alone finally gave way in the 1950s to the Apgar score, which has
also been used as a guide for resuscitation and as a statistical tool (32). The
scoring system was based on observations of color, respiratory effort, heart rate,
tone, and reflex activity (33). However, lack of correlation has been found with
this group of factors and later chronic neurological deficits (34, 35). Similarly,
Diagnostic Approach to the Infant 53

each of the variables in the score has been shown to be a poor predictor of later
outcome (36).
The use of blood acidemia and base deficits in the newborn as markers of
asphyxia with later neurological sequelae have also shown poor correlation (37,
38). Predictability is improved with the addition of a low 5-min Apgar score and
the need for intubation at term (39). Various newborn spinal fluid components
have been shown to be effective markers of hypoxic-ischemic encephalopathy
(40). However, they would not ordinarily be obtained without evidence of obvi-
ous neurological abnormality.
Predictive effects of newborn urine products have also been considered
since asphyxia results in injury to the kidney. Paucity of urine flow (oliguria)
and elevated β 2-microglobulin at 36 h have been found to correlate with later
neurological deficits (41). A more recent finding has shown a high correlation
between the ratio of urinary lactate to creatinine within the first 6-h of birth in
those infants who are likely to develop hypoxic-ischemic encephalopathy (42).
It should be kept in mind that even if these or other biochemical markers of
hypoxic-ischemia stand the test of time and experience, they deal only with as-
phyxia and ischemic injury to the brain, which represent but one etiological basis
among many for static encephalopathy (see Chapter 2).

2. Prenatal
Prenatal screening has also had extensive development, including amniocentesis,
chorionic villus sampling, and the use of ultrasound. These tools are used to
monitor the pregnancy and to identify specific abnormalities that may include
developmental disabilities such as Down syndrome (43).

3. Neuroimaging
Cranial ultrasonography, cranial tomography, and magnetic resonance imaging
(MRI) now have considerable capability of documenting peri and intraventricular
lesions, as well as demonstrating hypoxic-ischemic encephalopathy in premature
and high-risk infants (44). Moreover, definite image patterns have been found to
be associated with the clinical course of the infant (45,46). And, most recently,
proton magnetic resonance spectroscopy (MRS) is being used to observe abnor-
mal intracellular cerebral metabolites within hours of birth, which correlates well
with later neurological deficit (47). Nevertheless, all of these techniques deal with
only one possible etiology of developmental disabilities.

B. Developmental Screening
Recognizing that early development is a dynamic and changing process has led
to extensive efforts to anticipate and predict developmental abnormality in very
54 Scherzer

young children. A large variety of rating/screening instruments have burgeoned

within recent years, with varying degrees of accuracy for prediction of (1) devel-
opmental delay; (2) definite developmental abnormality; and (3) specific develop-
mental diagnoses. Among those most commonly used at the present time are the
following.

1. Developmental Scales
Amiel-Tison (48)
Bayley (49)
Brazelton (50)
Dubowitz (51, 52, revised)
Haataja et al. (53)
Peabody (54)
Prechtl (21)

2. Developmental Screening Tests

Denver Developmental Screening Test (Denver II) (most commonly used)
(55)
Batelle Screening Test (56)
Clinical Adaptive Test (CAT)/Clinical Linguistic and Auditory Milestone
Scale (CLAMS) (57)
Knobloch Revised Screening Inventory (58)
General Movements (GMs) Assessment (30, 59, 60)

3. Motor Assessment Instruments

Alberta Infant Motor Scale (AIMS) (61)
Early Motor Pattern Profile (EMPP) (62)
Gross Motor Function Measure (GMFM) (63)
Movement Assessment Inventory (MAI) (64)
Test of Infant Motor Performance (TIMP) (65)
Clearly, reliability, sensitivity, and validity of any of these instruments vary
greatly, while predictive power increases with the age of the child (66). At present
none are well-standardized (67). Moreover, none of them deal effectively with
early differential diagnosis for the infant less than 12 months.
In addition to the use of, or findings from, various existing scales, it is
essential to have the perspective of a dynamic evaluative approach that: (1) identi-
fies factors relating to significant risk for disability; and (2) utilizes variables
that can be followed to make an early determination of specific developmental
abnormality.
Diagnostic Approach to the Infant 55

The scales currently in use have limitations in both these areas. However,
they can provide an important screening function as a basis of referral for full
evaluation. Alternatively, specific screening tests, such as the Denver, the CAT/
CLAMS, or the Bayley, can provide important information about the functioning
level of the infant, and may provide a baseline for change over time.
With these considerations in mind, we offer in the following sections a
broad developmental evaluation approach to identification of the infant from birth
to 3 years based upon clinical experience and long-term follow-up.

IV. DEVELOPMENTAL EVALUATION APPROACH TO

DIAGNOSIS

The complex developmental nature of the condition with its late emerging motor
signs makes early identification of cerebral palsy a diagnostic challenge. There
is obviously no early pathognomonic sign, x-ray, or laboratory test that, in itself,
is confirmatory. Evidence to substantiate a diagnosis must be gathered in an or-
derly and consistent sequential way, with full knowledge of the total maturation
process, rather than fixation on any given focal neurological sign or physical
deficit. This is the basis of the developmental approach to diagnosis.
One must start with concern about risk and an index of suspicion. The
beginning point is often the pediatrician, family practitioner, or other health pro-
fessional who is consulted by a concerned parent whose child is not making
typical progress in motor milestones or speech. Too often the matter may not be
given serious consideration if a specific motor abnormality is not found. The
parent may be reassured that the child ‘‘will grow out of it,’’ and told to return
if no progress is forthcoming, in the hope that delayed development will ulti-
mately speed up and reach a typical pattern. A similar situation may occur, as
well, even in a highly sophisticated neonatal intensive care unit. For example,
an infant is discharged following treatment for respiratory distress syndrome.
Subsequent difficulty in feeding and ordinary infant management, when brought
to the attention of medical staff on follow-up clinic visits, may be attributed
to immaturity, poor organization at home, or emotional upset within the family
environment. In fact, each of these situations may represent a child with signifi-
cant developmental delays due to a fixed brain lesion that ultimately will appear
as one of the major motor forms of cerebral palsy. Parental concern may well
be appropriate while the professional response is dilatory or insensitive.
Professional awareness is the starting point in early diagnosis and must be
based upon sensitivity to possible neurological deficit in any infant with develop-
mental delay or behavior problems. The obvious first priority is to utilize history,
physical examination, and appropriate laboratory studies to rule out the possibil-
ity of a progressive CNS disorder. With the assurance that progressive CNS pa-
56 Scherzer

thology is not present, the basis of parental concern must be probed further, rather
than merely looking for a discrete structural or neurological abnormality. Knowl-
edge of the developmental process needs to be incorporated by the professional
and used appropriately as with any other diagnostic tool. Only in this way will
it be possible to develop a realistic and appropriate sense of whether a child is,
in fact, at risk of cerebral palsy or other developmental disability. The index
of suspicion should then generate initiation of a full process of developmental
evaluation, and not simply a physical examination. This should be recorded using
an outline such as that illustrated in Appendix B.
It is essential to follow a systematic and uniform multifactor developmental
evaluation approach in order to identify the specific diagnosis (if possible) in
children who clearly have a nonprogressive developmental disability (68). Table
1 provides an outline of the developmental evaluation procedure that is detailed
in the following sections.

A. Developmental History
1. Chief Complaint
The chief complaint or concern of the parent presents the initial focus. Often, this
is diffuse and sometimes disorganized, with confusion about the actual problem.
‘‘Advice’’ from friends and relatives, and poorly understood information gleaned
from the media, may greatly color the real issues. The time-consuming procedure
of directing and putting into order these concerns may discourage even the most
patient examiner. Skillful and well-directed interviewing, however, will channel
unrelated or even diffuse information into a pattern that can be integrated into
the history (69). The examiner should elicit not only the area of most concern,
but also the age and circumstances at which the problem was first noted. This
will be helpful in guiding discussion about the needs of the family.
An accurate and complete history is the first step in the process of develop-
mental evaluation. Adequate records must be obtained where possible. However,
birth and hospital records may not be sufficiently detailed or accurate, particularly
if obstetrical or neonatal events have been complex or traumatic. On the other
hand, reliability and possible bias of the parent or guardian should be weighed
in assessing the information given. It is important to obtain information using a
well-organized, logical sequence of questions, so that gaps or omissions will be
minimal. Factors that may be of significance are discussed below.

2. Family and Genetic History

Parental and sibling health should be reviewed, particularly as it relates to the
prepregnancy period. Endocrine and metabolic disorders such as thyroid, pituitary
Diagnostic Approach to the Infant 57

Table 1 Developmental Evaluation Procedure

A. Developmental History
1. Chief complaint
2. Family and genetic history
a. Pregnancy
b. Labor/delivery
c. Perinatal/neonatal
3. Developmental milestones
4. Other developmental features
5. Reviews of systems
4. Other developmental features
5. Reviews of systems
6. Past medical history
B. Developmental Physical Examination
C. Developmental Neurological Examination
1. General observation
2. Quality of general movements
3. Tone
4. Patterns of motor behavior
a. Primitive
b. Postural
5. Sensation
6. Cranial nerves
7. Cerebellar function
8. Dystonia
9. Motor signs
a. Upper motor
b. Lower motor
10. Neurological soft signs.
D. Developmental Screening Instruments
E. Laboratory Evaluation

abnormality, or diabetes may be relevant. History of seizures and other CNS

problems should be detailed, including any evidence of mental retardation, learn-
ing disorders, attention deficits, cerebral palsy, seizures, emotional disorders, con-
genital malformations, or multiple handicapping conditions among any family
members. Evidence for any genetic disease should be elicited, particularly possi-
ble patterns of genetic developmental transmission, including conditions such as
Down’s syndrome, Sturge-Weber syndrome and related disorders, genetic forms
of cerebral palsy, and evidence for familial organic learning disorders or varieties
of mental retardation.
58 Scherzer

(a) Pregnancy. Experiences during the pregnancy are important and re-
late to feelings of well being or anxiety, presence of bleeding, health problems,
and fetal movements. Each of these experiences may give an indication of perti-
nent abnormality. Persistent bleeding may indicate intrauterine developmental
abnormality, especially if it occurred early in the pregnancy. Infection, toxemia,
and use of medications, such as diuretics, anticonvulsants, and various types of
antibiotics, may be of importance. The use or abuse of tobacco, alcohol, and drugs
should be questioned. Late-onset or diminished fetal movement may indicate a
poorly developing fetus. History of possible trauma or stress should be carefully
evaluated.
Length of gestation and the presence of prematurity may be crucial. It is
often difficult to obtain an accurate history of pregnancy length due to conflicting
dates and various obstetrical calculation methods. Every effort should be made
to document possible premature gestation to better assess the relation to birth
weight and the extent of developmental risk.
(b) Labor and Delivery. Details of labor should include extent of labor
before delivery and rate of progression. Evidence for dystocia or prolonged labor
should be considered as well as precipitate or rapid labor. Either may be of con-
siderable significance. A prolonged period between membrane rupture and deliv-
ery could be a basis for fetal infection. Obstetrical features of the delivery must
include use of anesthesia, mechanical events such as version, abnormal presenta-
tions, use of instrumentation, and rationale for caesarian section if performed.
The place of delivery may be relevant, especially if at home, en route to the
hospital, or under unusual circumstances.
(c) Perinatal and Neonatal Events. Assessment of the child’s condition
at birth requires information about birth weight, presence of a nuchal cord, respi-
ratory status, the need for prolonged oxygen treatment, continuous apnea, cyano-
sis, or resuscitative procedures. History of possible sepsis, meningitis, neonatal
seizures, and the presence of any type of congenital malformation is important.
Jaundice shortly after birth due to possible blood group incompatibility should
be distinguished from subsequent hyperbilirubinemia in the neonatal period, pos-
sibly related to breast-feeding, galactosemia, infection, such as hepatitis, or struc-
tural abnormality of the liver. Reports of an abnormally small or large head cir-
cumference should be given appropriate consideration for microcephaly or
hydrocephaly.
History of progress up to the first month should be selectively examined
for an overview of the entire neonatal period. Particular attention should be given
to evidence of poor extrauterine adjustment of the infant. This could include
marked irritability, hyperactivity, limited or negative environmental contact, or
inability to develop a reasonable feeding and sleeping schedule. Adjustment to
feeding, in particular, may be crucial, especially if the child sucks or swallows
 Diagnostic Approach to the Infant 59

poorly and is thought to have ‘‘colic.’’ Colic may be one of the earliest signs of
central nervous system malfunction and represents one of a number of problems
in infant organization and adaptation referred to as ‘‘behavioral soft signs,’’ dis-
cussed later in this chapter.

3. Developmental Milestones
The gross motor developmental milestones present an orderly sequence through
which the child is expected to progress normally and are a major indicator of
developmental progress (70). The range of normal compared with late and abnor-
mal appearance is given in Table 2. Note the wide range of normal appearance
in each modality and the marked delay observed in a group with cerebral palsy.
An arrest or delay at any given stage is usually the basis for initial parental
referral. This is the reference point from which the examiner must go back and
bring into focus the chief complaint as a first step in the developmental evaluation
process. The fundamental requirement is to make a distinction between the de-
layed developmental progress of a possible static encephalopathy, in contrast to
the child with a history of regression from previously achieved function who
may have a progressive or degenerative condition (71).

Table 2 Normal Development Compared with Average Development of 100 Cerebral Palsy
Children
60 Scherzer

It is useful to elicit information about developmental milestones in the fol-

lowing order, specifically inquiring about when each of the modalities was
achieved: (1) smiling; (2) head control in prone position; (3) grasping; (4) trans-
ferring objects from hand to hand; (5) sitting; (6) crawling, including quality of
motion; and (7) independent walking with quality of movement and evidence of
any deficits.
Oral development should be carefully reviewed for any difficulties in suck-
ing, chewing, tongue thrusting, and drooling, problems in tooth eruption, enameli-
zation, jaw structure, and dental development. Onset of speech should be noted,
including intelligibility and quality of sounds, with a description of progression
to phrases and sentences, or any evidence of regression. Verbal behavior is most
important, bearing in mind verbosity, repetitive speech, and early evidence of
echolalia. Information should also be obtained about hearing acuity and discrimi-
nation, visual development, and the onset of and response to environmental
stimuli.
Patterns of sleep should be noted, with attention to getting to sleep and
wakefulness. Also levels of ability in taking off clothes, dressing, and early self-
care should be considered.
It is essential to emphasize that the developmental milestones present the
major clinical parameter of progressive central nervous system growth and inte-
gration. Delay or arrest beyond the normally acceptable range may provide the
most significant index of suspicion for developmental disability, particularly
when considered in conjunction with abnormality in developmental history, in-
cluding family background, pregnancy, labor, or delivery. No one factor alone
will necessarily be definitive, but all taken together can form a framework to
establish the diagnosis.

4. Other Developmental Features

Social and emotional variables give an insight into personality integration. Atten-
tion should be given to temper tantrums, breath holding, hyperactivity, limited
attention span, and ability to separate from family and adjust in new situations.
Play interests are important and should be age appropriate. These interests will
closely correlate with any obvious physical deficits or limitations. Reaction to
and participation in group activities, such as nursery classes, gives an insight into
demands for attention, supervision, and ability to react both physically and so-
cially. This may also provide an early indication of behavioral problems, learning
disabilities, or fine motor function, and should be noted. Independence in self-
care activities should be assessed, including feeding, dressing, and toileting. Prob-
lems with the latter may have both neurological and emotional aspects that should
be carefully weighed.
Diagnostic Approach to the Infant 61

5. Review of Systems
Particular consideration should be given to general medical or health problems
and previous hospitalizations either associated with or related to possible neuro-
logical deficit. Examples would include any evidence of headaches, tics, seizure
activity, unexplained vomiting, lethargy, personality change, or loss of previously
achieved function. Any of these symptoms could be related to hydrocephalus,
an intracranial vascular lesion, or neoplasm. Details of any seizure activity should
include association with fever, frequency, duration, and character of the move-
ments.

6. Past Medical History

Apart from seizure history, information should include data from any previous
neurological evaluation with description of electroencephalogram, CAT or MRI
scans, and other findings. Results of psychological and developmental evaluations
should be obtained. Documentation of medications in use should include rationale
and effect. Previous treatment including occupational, physical, and speech thera-
pies should be noted, with details of associated changes and the child’s response.
Similar data are needed about bracing or assistive devices used, and types of
surgery performed.
At the conclusion of the developmental history, the examiner should indi-
cate an impression of parental interest, attitude, and ability to deal with the child.
During the course of the interview, it is generally possible to arrive at some
awareness of these interpersonal factors that can later provide a basis for needed
supportive services.

B. The Developmental Physical Examination

The setting of the examination is important and should provide a relaxed, unhur-
ried atmosphere for parent and child. Obtained measurements of height, weight,
and head circumference should be plotted on appropriate standards and analyzed.
Observation of the child gives the first indication of environmental re-
sponse, social interaction, and relation to parent. Much of this observation can
be done while obtaining the developmental history. Evidence should be noted
for possible visual or hearing deficits and the quality of verbal response or speech.
Level and appropriateness of activity and behavior can also be gauged. Structural
abnormalities must be detailed in an orderly manner through examination of skin,
head and neck, trunk, abdomen, back, spine, and extremities. Obvious malforma-
tions could immediately identify conditions such as Down’s syndrome, Sturge-
Weber syndrome, neurofibromatosis, tuberous sclerosis, hydrocephalus, menin-
gomyelocele, encephalocele, hemiplegia, and brachial plexus paralysis (72).
62 Scherzer

Many other minor structural deviations may also be apparent early. Some may
be part of a syndrome complex, such as abnormal facial features in fetal alcohol
syndrome. Others more frequently will not form part of a specific classification,
but their presence may suggest associated central nervous system malformation.
Examination of the head requires careful measurement of head size with
accurate recording on a standardized instrument (73). Simultaneous check of size
and shape of fontanelles should lead to immediate referral if there is any evidence
of hydrocephalus or premature suture closure. Also, failure of head growth over
a period of months, particularly in a girl, may be an indication of a progressive
disorder, such as Rett Syndrome (74). Possible microcephaly should be noted,
as well as cleft palate or lip, structural problems of tongue, mouth, nose, and
jaw, and abnormal set or configuration of the ears. These structural anomalies
are not unusual in children with severe developmental deficits.
Examination of the eyes is not as difficult in small children as might be
anticipated if the parent assists. The procedure may be most rewarding. Readily
obtainable peripheral eye findings may include strabismus, hypertelorism, epi-
canthus, cataracts, congenital glaucoma, heterochromia, corneal ring (Wilson’s
disease), depigmented iris of albinism, blue sclerae of osteogenesis imperfecta,
scleral pigmentary deposits with ochronosis, or a cloudy cornea noted in muco-
polysaccharidosis.
The fundi must be carefully examined for evidence of retinal inflammation
as in rubella, toxoplasmosis, or cytomegalovirus infections. Retinal degeneration
may indicate a nonspecific degenerative condition, or retinitis pigmentosa, while
macular degeneration is specific for Tay-Sachs disease, Nieman-Pick disease, and
Gaucher’s disease. Also to be noted are retinal changes indicative of intracranial
pressure due to hydrocephalus or tumor, and evidence of possible vascular lesions
or malformation.
Neck examination should consider signs of webbing and shortening associ-
ated with Klippel-Feil syndrome, platybasia and basilar impression, or possible
Turner’s syndrome. Congenital torticollis is seen in conjunction with other anom-
alies, and enlarged thyroid is of major concern. Also, a check should be made
for bruits, both in the neck and head, for vascular malformations. Chest evaluation
should consider anomalies of the bony thorax such as pectus excavatum and
carinium, absent ribs, or aplasia of the pectoralis muscles. Lungs and heart should
be assessed for normal functioning.
Abdominal fullness or asymmetry may suggest hydronephrosis associated
with renal anomalies, Wilms’ tumor, or neuroblastoma. Enlarged liver or spleen
would give rise to many diagnostic considerations relating to developmental ab-
normality including biliary atresia, galactosemia, or Wilson’s disease, hemoglo-
binopathy such as in sickle cell anemia or thalassemia, or congenital red cell
abnormality in spherocytosis. Hernia is a common finding, often seen in connec-
tion with other malformations.
Diagnostic Approach to the Infant 63

Genitalia should be noted for ambiguity, abnormality in size or shape, tes-

ticular descent, presence of hypo or epispadius. Testicular enlargement may be
associated with fragile X syndrome. Extremities should be examined for syndac-
tyly, abnormal palmar creases seen in Down syndrome, shortening or asymmetry
present in hemiplegia or hemihypertrophy. The hips must be carefully assessed
for possible dislocation.
Observation of the back should check for lumbosacral hemangioma, anom-
alous hair, dermal sinus, or raised lesion consistent with meningomyelocele. Spi-
nal deviation including fixed scoliosis, kyphosis, or excessive lordosis needs fur-
ther review.

C. Developmental Neurological Examination

1. General Observation
The child’s activity in relating to the environment should be carefully noted dur-
ing the physical examination, with special emphasis given to awareness, interest
in the environment and examiner, irritability, attention span, and evidence for
hyperactivity. Observation of gross motor function and posture can be done si-
multaneously, including head, neck, and trunk control, sitting, crawling, standing,
walking, and hand use. Attention to patterns of movement may indicate the pres-
ence of asymmetry consistent with hemiplegia or evidence of dystonia. Character
of the cry, voice, and sounds should also be readily apparent.

2. Quality of General Movements

Whether or not video and EMG recording capability is available, it is important
to be aware of the writhing character of GMs in the normal term infant, which
change to a fidgety, irregular pattern by 2 months. Quality of GMs should be
assessed when the infant is awake, active, and not crying (75). There is significant
correlation of the quality of these GMs with normal and abnormal neurological
development, especially in preterm and immediate post-term ages (76).

3. Tone
Tone should be assessed early in the examination when the child is most relaxed.
A useful method is to pull the arms forward to sitting and standing positions with
the child supine and observe ability to maintain head and neck upright and stabi-
lize the trunk. Obvious hypotonicity will be apparent with lag of the head and
trunk (Fig.1). On the other hand, maintenance of a hyperextended trunk and rigid
standing with support in the very young infant may be the earliest indication
of pathological hypertonus (Fig.2). Distinction should be made between tone of
extremities and trunk and any disparity noted. A pattern of hypertonic extremities
64 Scherzer

Figure 1 Hypotonia of head and trunk when child is brought to sitting.

with hypotonicity of the trunk may be an indication of underlying athetosis. The

ability of a newborn to dorsiflex the foot completely onto the shin is considered
normal and any restriction may suggest abnormal tone (77) (Fig. 3). Degree of
head lag has been quantitated as a standardized reference for comparison with
the norm (78).
The floppy child seems to have relatively little control over one joint upon
another. Such a finding raises the possibility of a wide differential diagnosis in-
cluding mental retardation, cerebral palsy, and varieties of myopathies. Generally,
children who have a cerebral palsy diagnosis and are extremely hypertonic early
may eventually have the athetoid form, while those with initial hypotonia may
later become spastic (79).

4. Patterns of Motor Behavior

Assessment of earliest behavior provides a major insight into brain stem function
and CNS developmental integration. It may provide the earliest indication of
fixed motor deficit consistent with cerebral palsy long before any discrete motor
signs are present. Two major categories function dynamically as the nervous
system develops toward maturation of higher centers. The first is a group of
primitive motor patterns present at birth and without which the infant would not
Diagnostic Approach to the Infant 65

Figure 2 Hypertonia of entire body using under arm support.

be viable. Most of this motor behavior typically disappears by 4 to 6 months

with maturation (80), as the postural motor patterns become manifest and remain
throughout life. The latter are closely associated with and underlie rolling, sitting,
crawling, and, eventually walking.

(a) Primitive Motor Patterns. The major primitive motor patterns that
have been described include startle, Moro, palmar and plantar grasp, rooting,
sucking, placing, truncal incurvation, asymmetrical tonic neck, crossed extension,
tonic labyrinthine, and others. Since a large number of primitive motor patterns
66 Scherzer

Figure 3 A normal newborn can dorsiflex the foot right onto the shin. (From Ref. 4,
 1966.)

are present, and some authors make no distinction between primitive and postural
behaviors, there is controversy concerning which have the greatest clinical mean-
ing and predictive significance. Dagarssies places relatively little importance
upon truncal incurvation, but considers crossed extension to be critical in matura-
tion (30). Capute et al., on the other hand, include truncal incurvation among the
major predictive motor patterns (reflexes) being intensely evaluated in an exten-
sive long-range study (81). The revised Dubowitz scale utilizes the following:
tendon, suck, gag, palmar grasp, plantar grasp, Moro, and placing (52). Gupta
Diagnostic Approach to the Infant 67

favors rooting, Moro, crossed extension, plantar, positive support, placing, asym-
metyrical and symmetrical, palmar, tonic labyrinthine, and Landau (82). Haataja
et al. focus on tendon reflexes, arm protection, vertical suspension, lateral tilting,
and forward parachute in their optimality score for the infant between 2 and 24
months of age (53).
Our own clinical experience has led to use of the following primitive motor
patterns in the diagnostic evaluation: Moro, palmar grasp, asymmetric tonic neck,
rooting, and sucking (Fig. 4a–e). Weak expression such as poor rooting, sucking,
or limited Moro response, would be consistent with abnormality, particularly if
there is associated asymmetry. Any persistence of these motor patterns beyond
4 to 6 months would provide a strong index of suspicion for significant fixed
motor brain deficit, particularly in association with an abnormal developmental
history. An obligatory asymmetric tonic neck (ATN) is always abnormal, espe-
cially if the child cries in this position. A strong and persistent ATN is frequently
later associated with dystonic cerebral palsy (83).

(b) Postural Motor Patterns. A number of postural motor patterns are

also identified whose diagnostic relevance is variously recognized (84). Among
those we have found to be clinically relevant are neck righting, parachute or
protective extension, and the Landau (Fig. 5a–c).
An overview of these developmental patterns of motor behavior is shown
in Table 3, indicating the sequential disappearance of the primitive motor patterns
and appearance of postural motor patterns. Each of these should be tested during
the diagnostic evaluation and considered in relation to timing, strength of expres-
sion, and symmetry. Use of abnormal patterns of motor behavior in infant differ-
ential diagnosis will be discussed in detail later in the chapter. In general, it
should be noted that both delayed disappearance of primitive motor patterns and
delayed appearance of posturals is consistent with cerebral palsy. Normal primi-
tive disappearance and delayed posturals is more characteristic of mental retarda-
tion (85).

5. Sensation
Sensory modality evaluation should include response to touch and pain. Where
indicated, specific responses at various dermatome levels should be obtained to
rule out possible lower motor lesions.

6. Cranial Nerves
Cranial nerve function may be difficult to evaluate in small children. An accurate
observation of III, IV, and VI can be obtained for evidence of strabismus; V for
68 Scherzer

(a)

Figure 4 Primitive motor patterns that persist beyond 4 to 6 months and may indicate
fixed motor brain deficiency: (a) Moro; (b) palmar grasp (from Ref. 4,  1966); (c) strong,
persistent asymmetric tonic neck; (d) abnormally delayed rooting; and (e) abnormally de-
layed sucking.

mandibular function; VII for corneal reflex and facial asymmetry; IX and XI for
swallowing and gag reflex. Function of XII may be possible to estimate, espe-
cially if there is tongue deviation.

7. Cerebellar Function
Cerebellar dysfunction may be equally difficult to recognize in the infant and
very small child. Exaggerated opticokinetic nystagmus should be elicited using
response to horizontal movements. Ataxia may be indicated through observation
Diagnostic Approach to the Infant 69

(b)

of balance of head, neck, and trunk, and demonstration of hand use with small
objects.

8. Dystonia
Disparity of tone between trunk and extremities may be the first suggestive sign
of dystonia, particularly if there is significant hypotonicity of the trunk. This may
quickly alternate to truncal hypertonicity. Stiffness and hyperextension of the
entire body, but particularly of the face, head, and upper limbs, may dramatically
change. Apparent limitation in range of motion in the extremities may give way
to full movement and no restriction if the child can be relaxed. In the slightly
older patient, facial movements and grimacing may be observed together with
movements of the upper limbs and an overpronated position of arms and hands.
Variable tone remains a cardinal feature that may involve trunk and extremities.
Depending upon the state of the child, these features may vary from time to time,
especially in early developmental stages. Actual dystonic movement is likely to
appear very late, often well beyond 18 months. The early stiffness noted before
the child is fully relaxed may often be misdiagnosed as spasticity. Variability in
findings related to dystonia has also played a part in the past confusion of cerebral
palsy classification (see Chapter 1) particularly relating to types of ‘‘athetosis,’’
70 Scherzer

(c)

Figure 4 Continued.

and the relation to tremor, atonia, rigidity, and even ataxia. The clinical distinction
between these can be most difficult in a very small child.

9. Motor Signs
(a) Upper Motor. Upper motor neuron signs can generally be elicited
without difficulty, particularly if there is asymmetry. Markedly exaggerated deep
tendon reflexes can be judged accurately indicating evidence for spasticity.
Babinski sign may be variable and often cannot be definitely evaluated (86). Its
significance even in newborns is also questioned since it may not be found at all
Diagnostic Approach to the Infant 71

(d)

(87). Frequently, clonus can best be demonstrated by placing the child in the
prone position and gently dorsiflexing the great toe or anterior part of the foot.
This maneuver tends to displace voluntary motor activity away from the feet so
that the reflex is not dampened.
(b) Lower Motor. Lower motor signs should be considered when there
is evidence of impaired sensation at segmental levels. Testing of strength should
be attempted using estimates of muscle/joint resistance, and observing paucity
of discrete extremity movements.
10. Neurological Soft Signs
Soft signs refer to a group of functional neurological findings that are general
and not focal, often subtle, and may relate to faulty integration in early develop-
72 Scherzer

(e)

Figure 4 Continued.

ment (88). They give clues to underlying poor organization and possible central
nervous system deficit. Early on they are manifest as ‘‘behavioral’’ soft signs
and later may be identified as discrete neurological abnormalities in fine motor
and integrative functioning. One of the earliest may affect sucking, swallow-
ing, and feeding, and has already been mentioned previously in connection with
neonatal ‘‘colic.’’ Persistent irritability, demanding behavior, continuous gross
movement activity, markedly limited attention span, delayed speech with poor
or repetitive expression, withdrawn and isolated behavior, and irregular sleep
habits may all suggest underlying deficit in the infant.
For the older child, a systematic approach to observing other of these fea-
tures is indicated if the subject is capable of some cooperation. This assessment
would include visual tracking without moving the head, blowing out the cheeks,
lateralizing the tongue, and demonstrating fine finger/ rapid succession move-
ments.
The soft signs add another dimension to early differential diagnosis by
either helping to confirm a diagnosis of cerebral palsy when used in conjunction
with other positive motor findings or suggesting areas other than gross motor
as the basis of developmental deficit. These might include mental retardation
syndromes, attention deficit/hyperactive disorder, or the pervasive developmental
disorders. More specific and directed diagnostic assessments could then be under-
taken.
Diagnostic Approach to the Infant 73

(a)

(b)

Figure 5 Postural motor patterns of diagnostic and prognostic significance: (a) neck
righting; (b) protective extension (parachute) (Ref 84a); and (c) full extension in the Lan-
dau position.
74 Scherzer

(c)

Figure 5 Continued.

D. Developmental Screening Instruments

The developmental neurological evaluation can be enhanced by the additional
use of appropriate screening instruments noted previously to assess levels of func-
tion. The Denver Developmental Screening Test, for example, can be adminis-
tered in a short time by the physician or other professional, and provides a visually
descriptive index of functioning in fine and gross motor, language, and social
skills (55). It has the added advantage of being easily updated and provides a
visual impression of functional change.
The Clinical Adaptive Test (CAT) assesses problem-solving skills, while
the Clinical Linguistic and Auditory Milestone Scale (CLAMS) screens language
development from birth to age 3. Both are administered as an office procedure
(57).

Table 3 Patterns of Motor Behavior and Age (Month) Normally Demonstrated

Months 1 2 3 4 6 9 12 15 18 24

Primitive
Moro ⫹ ⫹ ⫾ ⫾ 0 0 0 0 0 0
Palmar ⫹ ⫹ ⫾ ⫾ 0 0 0 0 0 0
ATN ⫹ ⫹ ⫾ ⫾ 0 0 0 0 0 0
Rooting/suck ⫹ ⫹ ⫹ ⫾ ⫾ 0 0 0 0 0
Postural
Neck right 0 0 0 ⫾ ⫾ ⫹ ⫹ ⫹ ⫹ ⫹
Parachute 0 0 0 0 ⫾ ⫹ ⫹ ⫹ ⫹ ⫹
Landau 0 0 0 0 0 0 ⫹ ⫹ ⫹ ⫾
Diagnostic Approach to the Infant 75

Cognitive functioning of the infant can also be effectively evaluated in the

office setting with the Bayley Infant Developmental Screener (49). Alternatively,
referral could be made for formal psychological testing.
Other instruments, such as the WeeFIM, may be used equally to assess
function initially, and changes in function with subsequent reevaluations (89).
The interests, special concerns, and experience of the examiner with a particular
test would determine selection.

E. The Scope of Laboratory Evaluation

The extent to which laboratory procedures are needed to aid in diagnosis will
depend upon the findings of the physical and neurological examinations in rela-
tion to the developmental history. For example, the child with a history of prema-
turity and neonatal anoxia, who is markedly delayed in milestones and has signs
of generalized spasticity, will need few laboratory data to support a diagnosis of
cerebral palsy. However, a patient who has a normal birth history and marked
progressive developmental delay with a paucity of findings would require a very
extensive work-up that might even include hospitalization. Considerable variation
generally exists in the more typical situation between these two examples. A
major benefit of an organized, sequential system of developmental evaluation is
that it provides a focus and direction in the usual office or clinic setting that will
help to determine the extent to which more detailed workup will be indicated.
The child with a developmental delay must not be the subject of a shotgun ap-
proach using laboratory findings to determine whether a lesion exists. Rather,
the dynamic and changing nature of the central nervous system, especially one
in which there is some deficit, has to be viewed in its entirety.
Depending upon clinical indications, initial laboratory tests that may be
useful include any or all of the following: complete blood count and urinalysis,
serum lead level, TORCH titer, thyroid function studies, CPK, and urinary amino
acid scan. Fragile X testing must be considered, as well as a more extensive
genetics workup where indicated. Any evidence of micro- or macrocephaly re-
quires either brain CAT scan or MRI, depending on clinical judgment.
The electroencephalogram (EEG) is much abused and frequently misused.
However, it is mandatory where there is a definite seizure history, and a sleep
EEG should be considered if subclinical seizures are suspected as in pervasive
developmental disorder (90, 91). Where there is a behavior disorder or hyperac-
tivity, the EEG generally has little to add. As a routine procedure, it has no place
and should be discouraged. Unfortunately, many teachers and others who deal
professionally with children have come to regard it as a major developmental
diagnostic tool. They often need guidance and direction to discourage this ap-
proach.
76 Scherzer

V. FORMULATING THE DIAGNOSIS

A. Developmental Delay
It is not always practical nor desirable to place a diagnostic label on an infant.
When dealing with the very young nervous system, it is often not completely
clear at the time whether the evidence from developmental history, and physical,
and neurological evaluations is compatible with cerebral palsy or other specific
diagnoses. However, definite and significant developmental delay may be present
and should be identified (92). The judgment and clinical maturity of the examiner
will then determine how this is communicated and the subsequent course of ac-
tion.
The professional is sometimes hesitant to inform parents of possible non-
specific deficit because:
1. The index of suspicion is not high.
2. There is uncertainty about the diagnosis.
3. There is concern about unduly alarming parents.
4. There is lack of knowledge about available treatment and where to
refer the child.
5. The professional is unconvinced of treatment effectiveness.
However, when significant deficits are evident and confirmation of an exact
diagnosis such as cerebral palsy cannot be made with certainty, it is best to inform
parents that the child shows definite developmental delay without using a more
specific label. This preliminary diagnosis sets the stage for future action. It may
confirm what the parents already know and help return balance and stability to
the family. A threefold plan of action should then be recommended: (1) appro-
priate further diagnostic and laboratory testing; (2) referral for some form of early
intervention program; and (3) a clear commitment to continuing reevaluation
for specific diagnosis and assessment of functional change. This keeps open the
possibilities for future interventional strategies and demands that the child be
seen at regular periodic intervals to monitor change. Continuity of follow-up by
the same professional group over a period of time is essential, if at all practical,
to fully assess diagnosis, needs, and progress. Only in this way will it be possible
to provide adequate communication and support for parents and plan appropri-
ately for the future. The need for continuous reevaluation does not cease even
when a specific diagnosis can be made.
The recognition of significant developmental deficit in the young child will
lead to planning an appropriate program (see Chapter 4). The first concern is to
develop specific management techniques and procedures to assist in caring for
the child. These procedures are necessary because deficits may severely limit and
alter the usual daily child- care regime. Second, simultaneous treatment or ther-
apy is instituted to guide and stimulate a more normal pattern of neurological
Diagnostic Approach to the Infant 77

development and growth. Both management and treatment constitute the basis
for the approach to the infant with a nonspecific developmental deficit diagnosis,
as well as the young child with specifically identified cerebral palsy. The proce-
dures should be continuous and flexible enough to deal with the neurological
lesion as it becomes increasingly apparent and discrete.

B. Cerebral Palsy
It must be emphasized that the traditional motor forms of cerebral palsy are gener-
ally not present in the infant less than 1 year of age (93). These forms gradually
emerge during the first year and beyond as the abnormal nervous system matures.
The condition in very young children may appear merely as a nonspecific form
of developmental delay. There will initially be ‘‘definite abnormality’’ in the
quality of general movements within the first 3 to 4 months, with complete ab-
sence of fidgety movements (14, 60, 94). Tone will be aberrant, and there will
be persistence of primitive motor patterns, with delay in disappearance, and late,
often incomplete, emergence of postural motor patterns. Abnormal develop-
mental history is crucial in diagnosis. Paucity of laboratory findings is to be
expected. Where the developmental history is strongly positive and signs of ab-
normal quality of GMs, tone, and earliest motor behavior patterns are present, a
probable diagnosis of cerebral palsy may be appropriate long before the definitive
motor manifestations are apparent. Utilizing this sequential developmental evalu-
ation procedure can provide a systematic basis for considering a presumptive or
specific diagnosis within the first few months of life.
Consequences of the fixed motor lesion in cerebral palsy must be seen as
emerging and concomitant with growth of the central nervous system itself. This
is a dynamic, active process, at least from the initial moment of postnatal life
and probably earlier. However, cerebral palsy is not to be conceived as merely
one or more types of motor disturbance, but an array of developmental disorders
that may affect the most primitive functions, as well as sophisticated voluntary
actions, and often both.
In the older child, generally beyond 1 year, a diagnosis of cerebral palsy
can often be made indicating a specific motor type. This diagnosis may change
as the child grows and the definitive motor defect becomes more apparent (95).
Motor signs may also disappear early in very mild cases (96, 97). Also, the identi-
fication of a particular type of cerebral palsy frequently coincides with the age
at which a specific motor task is expected to be present. For example, inability
to perform pincer grasp may be a first indication of upper extremity abnormality
in hemiplegia (98).
As the child grows, one should formulate and update specifics of cerebral
palsy type and distribution, as well as extent and degree of involvement, using
a standard such as that of Palisano (99). For example, the diagnosis of cerebral
78 Scherzer

palsy should be identified as spastic quadriplegia, level III. Where possible, it is

useful to include these features in the diagnosis so that some prognostic outlook
is available.
Understanding the broad developmental scope of the condition forms the
basis for both identification and intervention for cerebral palsy. It is no longer
acceptable to wait for emergence of the spastic foot, the dystonic posture, or the
ataxic gait in deciding upon diagnosis or initiating treatment. Consideration must
be given as early as possible to recognition of the global developmental abnormal-
ity that exists so that appropriate means can be directed to remediate the spectrum
of deficit of the entire nervous system.
It is essential to keep in mind that cerebral palsy is always a presumptive
diagnosis, since confirmatory evidence is indirect and is based upon behavior
and development at a given time. One must always be on guard for any changes
that may be consistent with progressive disease, however subtle or slow in nature.
This is particularly true of cerebellar and mixed cerebral palsy types.

VI. DIFFERENTIAL DIAGNOSTIC CONSIDERATIONS

A. The Infant Developmental Evaluation Profile of Static
Encepahalopathies
Very early differential diagnosis of nonprogressive infant developmental disor-
ders (static encephalopathies) can be systematically approached utilizing a profile
of information from the developmental evaluation procedure (Table 1). This pro-
file (Table 4) will assist in heightening the index of suspicion of a given diagnosis

Table 4 Developmental Evaluation

Profile

I. History
A. Behavioral soft signs
B. Developmental milestones
II. Physical Examination
III. Neurological Evaluation
A. Quality of general movements
B. Tone
C. Reflex behavior
1. Primitive
2. Postural
D. Focal signs
Diagnostic Approach to the Infant 79

and, when the variables are considered together, can offer a specific recognizable
pattern consistent with characteristics of the emerging disorder.
Table 5 compares early diagnostic features frequently seen in the develop-
mental evaluation profiles of cerebral palsy, mental retardation, attention deficit/
hyperactivity disorder, and pervasive developmental disorders.

1. Congenital Cerebral Palsy

(a) History. There may be a positive history of abnormality in preg-
nancy, labor, or delivery, such as prematurity, respiratory distress, or other sig-
nificant difficulty in the neonatal period.

(b) Behavioral Soft Signs. These are frequently found in the neonatal
period. They may include colicky behavior with significant irritability, frequent
problems in feeding, and failure to develop regular sleep patterns. Clinical experi-
ence indicates that the combination of a significant pregnancy or birth history,
with colic-like behavior or sleep disturbance, are often preexisting factors when
the developmental delay is indeed cerebral palsy (100).

(c) Developmental Milestones. It is important to recognize the well-

established sequential nature of motor developmental milestones as well as the
broad range of their emergence (Table 2). The child with cerebral palsy will be
significantly delayed in reaching milestones, which is usually the basis of referral
for evaluation. The degree of delay must be assessed and considered in relation
to any abnormalities in the history and the possible presence of soft signs. Taken
together, this will heighten the index of suspicion for a diagnosis of cerebral
palsy.

(d) Physical Examination. In the infant with cerebral palsy the physical
examination generally will not yield specific findings. The exception is the situa-
tion in which there is motor asymmetry. Frequently there have been delays both
in growth and physical development with evidence of failure to thrive.

(e) Neurological Examination. ‘‘Definitely abnormal’’ GMs would be

expected, which would show a lack of fluency (cramped) in the term infant and
the expected fidgety quality in the child up to 3 to 4 months of age (60, 94).
Movements are symmetrical up to 3 months and then become asymmetrical in
the infant with hemiplegia (9).
Of major concern are abnormalities of tone. Infants with cerebral palsy
may be excessively hypotonic with floppiness and poor control of head, neck,
and trunk, and are often brought to attention of the health professional because
of inability to sit. On the other hand, they may show marked hypertonia with
stiffness and rigidity. Sometimes the child can be brought to a rigid standing
 80
Table 5 Developmental Evaluation Profiles with Early Differential Diagnostic Features Frequently Seen

Pervasive Attention deficit

Cerebral palsy Mental retardation development disorders hyperactivity disorder

I. History often positive gen. negative possible family possible family; often
males
A. Behavior Soft Signs colic, irritable, sleep ‘‘easy baby’’ colic, irritable, dificult colic, active, de-
problems management manding, sleep
problems
B. Milestones
1. Motor delayed delayed delayed advanced
2. Speech delayed delayed beginning onset, then possible delayed ap-
regression pearance
II. Physical exam not specific; delayed not specific or syn- not specific; poor so- not specific
growth drome cial response
III. Neurological Evaluation
A. General Movements ‘‘definitely abnor- ?abnormal ?‘‘mildly abnormal’’ ‘‘mildly abnormal’’
mal’’
B. Tone increased or de- hypotonia hypotonia normal
creased
C. Motor Behavior Patterns
1. Primitive persists beyond normal disappear persists beyond normal disappear
normal normal
2. Postural delayed appear delayed appear delayed appear early appear

Scherzer
D. Focal Signs appear late absent absent absent
Diagnostic Approach to the Infant 81

position at a very early age and considered to have advanced development by

the parent.
(f ) Patterns of Motor Behavior. Early motor patterns represent a power-
ful predictive feature in the diagnosis of cerebral palsy. (Table 3) (101). Primitive
motor patterns will be delayed in disappearance (85). There may also be abnor-
malities in their expression, depending upon the degree of severity, such as an
inadequate or incomplete Moro, rooting, or poor sucking. A very strong or obliga-
tory asymmetric tonic neck is almost pathognomonic of emerging dystonia.
Equally important is the delay in appearance or incomplete expression of
postural motor patterns (102). This combination of delay in disappearance of the
primitives, with variable expression, and delay in the appearance of posturals is
a significant predictor of cerebral palsy. This is especially true when viewed in
relation to the totality of abnormalities in tone, delays in achieving milestones,
the presence of soft signs, and an abnormal history.
(g) Focal Signs. It is essential to bear in mind that the specific motor
forms of cerebral palsy appear late as the abnormal central nervous system ma-
tures. Focal neurological signs other than asymmetry are not generally seen in
the infant. Instead, one must rely on more indirect indicators and multiple vari-
ables, such as the features included in the infant developmental evaluation profile.

2. Acquired Cerebral Palsy

Following an acute brain insult, cerebral palsy will be identified by specific or
mixed motor type in a child who had previously been typical in development.
Preceding features of tone, primitive or postural behavior patterns, and milestones
all would have been appropriate.

3. Genetic Cerebral Palsy

Genetically based cases of cerebral palsy are reported, particularly where there
is consanguinity (103, 104). Among the several motor forms, clear distinction
must be made between hereditary spastic paraplegia and cerebral palsy as a true
developmental disorder (105). Ataxia is most likely to have a genetic basis or to
be slowly progressive and mistaken for cerebral palsy (106). Few data about
parameters of early development are available concerning the relatively rare cases
of genetic cerebral palsy that meet the criteria for static encephalopathy.

4. Mental Retardation
In contrast to cerebral palsy, Table 5 shows that the infant with emerging mental
retardation generally has a negative history. The child is often ‘‘too easy’’ to
deal with and does not have feeding problems or sleep disturbances. Significant
82 Scherzer

delay in milestones is present. The physical examination is unremarkable other

than for poor responsiveness to surroundings, unless specific morphological fea-
tures are present. Definitive abnormalities of GMs have not been reported for the
post-term infant, but have been observed in the fetus with Down syndrome (9).
Significant hypotonia is the usual finding. Finally, a major differential point is
the normal disappearance of primitive motor patterns, but significant delay in the
appearance of the postural motor patterns (107). No focal neurological signs are
present.

5. Pervasive Developmental Disorders

The term ‘‘pervasive developmental disorders’’ refers to a heterogeneous group-
ing of generalized developmental deficits in a child including social, behavioral,
cognitive, learning, speech, and motor. Some of these children develop with per-
sistence in abnormality in several or all of these areas. Others eventually separate
out with all the features of autistic disorder. The ultimate course will not be
apparent in the infant, but rather there will be evidence of delayed and aberrant
development. A family history of some developmental abnormality may be
found, but is not common. Abnormal behavioral soft signs are likely, especially
with marked irritability, and difficulty in management. Limited responsiveness
to the environment would be expected. There would be definite delay in motor
milestones and often clumsiness. However, a pattern of normal or near normal
initiation of recognizable words, with subsequent complete regression of speech,
is regularly reported (108, 109). This regression may be an important early diag-
nostic marker in identifying pervasive developmental disorder (110). However,
Landau-Kleffner syndrome should also be considered where onset of speech ab-
normality follows initial normal development (111).
The physical examination would be unremarkable, except for evidence of
excessive activity or poor social responsiveness. The neurological evaluation may
well show ‘‘mildly abnormal’’ quality of GMs (94). Hypotonia may be present,
with delays in both disappearance of primitive and in appearance of postural
motor patterns. Focal signs would not be expected.

6. Attention Deficit/Hyperactivity Disorder

For the infant with attention deficit/hyperactivity disorder, a positive family his-
tory of hyperactivity or learning disabilities may be noted, especially in the father
or siblings. There may be some evidence of colic or sleep problems, and the
child is often very active and demanding in behavior. Motor milestones may be
significantly advanced. However, there is frequently a noticeable delay in devel-
oping speech patterns. The physical examination is not significant. ‘‘Mildly ab-
Diagnostic Approach to the Infant 83

normal’’ quality of GMs is reported (94). Tone is normal. Motor behavior patterns
show normal disappearance of the primitives, but there is frequently early appear-
ance of the posturals. No focal neurological signs are present.

B. Progressive CNS Disease

Progressive CNS disease must be given serious consideration when there are
delays in development, the pregnancy and birth history is normal, no abnormali-
ties are found on physical or neurological examination, yet there is marked abnor-
mality or delay in early motor patterns of behavior or milestones. This would be
particularly true if earlier milestones had been normal and subsequent develop-
ment is aberrant. Hydrocephalus with persistent increased intracranial pressure
should be seriously considered in children with full, open fontanelles and a mark-
edly enlarged cranial circumference. Neoplasia or vascular malformations must
also be ruled out in this situation.
The progressive lipoidoses would be evident by the cherry red macula in
Tay-Sachs and Niemann-Pick diseases, and hyperpigmented yellow retinal le-
sions in Gaucher’s disease. Cloudy cornea may be seen in mucopolysaccha-
ridoses, and corneal ring in Wilson’s disease.
Lesch-Nyhan syndrome occurs in boys in association with high uric acid
levels and a specific enzyme defect (112). Positive family history is frequently
noted. Unexplained high fevers are present and severe self-mutilation develops
early. Without restraint, self-amputation of fingers will occur. At 12 to 18 months,
typical severe generalized athetosis appears and has been frequently diagnosed
as the congenital variety. Contrary to many reports, it is not invariably associated
with mental retardation (113). Unfortunately, the condition is progressive and
the prognosis grave.
Other nonspecific progressive disorders of gray or white matter should be
considered where the initial history is normal in association with marked subse-
quent developmental delay. Pelizaeus-Merzbacher disease and a variety of leuko-
dystrophies will be arrived at by exclusion. Alexander’s disease is identified by
progressive macrocephaly without increased intracranial pressure.
Patterns of primitive and postural motor behavior have not been well stud-
ied in these cases, but would vary considerably with age at onset, pathology, and
degree of involvement.

1. Neuropathies
These are rare in young children and generally would not be a differential consid-
eration. An infectious polyneuritis with significant functional residue could be
considered when onset is acute and infection can be documented. Anterior horn
84 Scherzer

cell infection as in poliomyelitis is generally identifiable without difficulty. De-

generation of the anterior horn cell as in Werdnig-Hoffmann disease or variants
would be extremely rare, but should be considered.

2. Myopathies
A spectrum of benign intrinsic muscle disease is now recognized which may be
seen in association with the ‘‘floppy child’’ and delayed milestones. These in-
clude nemaline myopathy, central core disease, and others (114). The outcome
is generally favorable.
The muscular dystrophies might be a serious consideration where there is
evidence of marked hypotonia, weakness, or possibly lower extremity con-
tractures in the case of the newborn (115). Many different forms are now identi-
fied, including those with brain involvement, which show generalized delays
(116). Particular attention should be given when there are delays in milestones,
especially in a child not ambulating by 18 months, and to boys beyond the toddler
stage who show increased delay in progression, or actual regression in gross
motor development (117). Abnormality in previous patterns of motor behavior
or tone would not be expected.
Myasthenia gravis with severe hypotonia may be seen transiently in new-
borns in association with maternal disease or may be present as a primary disease
(118). The life-threatening nature of the condition should lead to prompt and
extensive evaluation.

VII. PERSPECTIVE ON DEVELOPMENTAL EVALUATION

We have seen that cerebral palsy is a nonprogressive brain disorder of varying

etiologies, with late-appearing focal neurological signs. Early diagnosis of the
infant must first rule out the possibility of progressive disease. A comprehensive,
multivariable procedure should then be used in search of often-seen characteris-
tics that may form a distinctive profile. Awareness of early profiles of other static
encephalopathies can be helpful in differential diagnosis. When a distinct diag-
nostic entity cannot be delineated, the term ‘‘developmental delay’’ should be
used to indicate significant concerns about development. This will enable early
referral on the often-long road to assistance with management and treatment.
Regardless of the degree of diagnostic certainty, it is essential that the child be
reevaluated at regular intervals to rule out the possibility of progressive disease,
observe changes in motor signs and development, and allow for appropriate man-
agement and treatment.
Diagnostic Approach to the Infant 85

APPENDIX A: NORMAL EMERGING DEVELOPMENT—

BIRTH TO 36 MONTHS

Neonatal Period (First 4 Wk)

Prone: Lies in flexed attitude; turns head from side to side; head sags on ven-
tral suspension
Supine: Generally flexed and a little stiff
Visual: May fixate face or light in line of vision; ‘‘doll’s eye’’ movement of
eyes on turning of the body
Reflex: Moro response active; stepping and placing reflexes; grasp reflex active
Social: Visual preference for human face
At 4 Wk
Prone: Legs more extended; holds chip up; turns head; head lifted momentarily
to plane of body on ventral suspension
Supine: Tonic neck posture predominates; supple and relaxed; head lags on pull
to sitting position
Visual: Watches person; follows moving object
Social: Body movements in cadence with voice of other in social contact; begin-
ning to smile
At 8 Wk
Prone: Raises head slightly farther; head sustained in plane of body on ventral
suspension
Supine: Tonic neck posture predominates; head lags on pull to sitting position
Visual: Follows moving object 180 degrees
Social: Smiles on social contact; listens to voice and coos
At 12 Wk
Prone: Lifts head and chest, arms extended; head above plane of body on ven-
tral suspension
Supine: Tonic neck posture predominates; reaches toward and misses objects;
waves at toy
Sitting: Head lag partially compensated on pull to sitting position; early head
control with bobbing motion; back rounded
Reflex: Typical Moro response has not persisted; makes defensive movements
or selective withdrawal reactions
Social: Sustained social contact; listens to music; says ‘‘aah, ngah’’
At 16 Wk
Prone: Lifts head and chest, head in approximately vertical axis; legs extended
Supine: Symmetric posture predominates, hands in midline; reaches and grasps
objects and brings them to mouth
Sitting: No head lag on pull to sitting position; head steady, tipped forward; en-
joys sitting with full truncal support
Standing: When held erect, pushes with feet
86 Scherzer

Adaptive: Sees pellet, but makes no move to it

Social: Laughs out loud; may show displeasure if social contact is broken; ex-
cited at sight of food
At 28 Wk
Prone: Rolls over; pivots; crawls or creep-crawls (Knobloch)
Supine: Lifts head; rolls over; squirming movements
Sitting: Sits briefly, with support of pelvis; leans forward on hands; back
rounded
Standing: May support most of weight; bounces actively
Adaptive: Reaches out for and grasps large object; transfers objects from hand to
hand; grasp uses radial palm; rakes at pellet
Language: Polysyllabic vowel sound formed
Social: Prefers mother; babbles; enjoys mirror; responds to changes in emo-
tional content of social contact
At 40 Wk
Sitting: Sits up alone and indefinitely without support, back straight
Standing: Pulls to standing position; ‘‘cruises’’ or walks holding on to furniture
Motor: Creeps or crawls
Adaptive: Grasps objects with thumb and forefinger; pokes at things with forefin-
ger; picks up pellet with assisted pincer movement; uncovers hidden
toy; attempts to retrieve dropped object; releases object grasped by
other person
Language: Repetitive consonant sound (mama, dada)
Social: Responds to sound of name; plays peek-a-boo or pat-a-cake; waves bye-
bye
At 52 Wk (1 Yr)
Motor: Walks with one hand held (48 wk); rises independently, takes several
steps (Knobloch)
Adaptive: Picks up pellet with unassisted pincer movement of forefinger and
thumb; releases object to other person on request or gesture
Language: A few words besides mama, dada
Social: Plays simple ball game; makes postural adjustment to dressing
15 Mo
Motor: Walks alone; crawls up stairs
Adaptive: Makes tower of 3 cubes; makes a line with crayon; inserts pellet in
bottle
Language: Jargon; follow simple commands; may name a familiar object (ball)
Social: Indicates some desires or needs by pointing; hugs parents
18 Mo
Motor: Runs stiffly; sits on small chair; walks up stairs with one hand held; ex-
plores drawers and waste baskets
Adaptive: Makes a tower of 4 cubes; imitates scribbling; imitates vertical stroke;
dumps pellet from bottle
Diagnostic Approach to the Infant 87

Language: 10 words (average); names pictures; identifies one or more parts of the
body
Social: Feeds self; seeks help when in trouble; may complain when wet or
soiled; kisses parent with pucker
24 Mo
Motor: Runs well; walks up and down stairs, one step at a time; opens doors;
climbs on furniture; jumps
Adaptive: Tower of 7 cubes (6 at 21 mo); circular scribbling; imitates horizontal
stroke; fold paper once imitatively
Language: Puts 3 words together (subject, verb, object)
Social: Handles spoon well; often tells immediate experiences; helps to undress;
listens to stories with pictures
30 Mo
Motor: Goes up stairs alternating feet
Adaptive: Tower of 9 cubes; makes vertical and horizontal strokes, but generally
will not join them to make a cross; imitates cicular stroke, forming
closed figure
Language: Refers to self by pronoun ‘‘I’’; knows full name
Social: Helps put things away; pretends in play
36 Mo
Motor: Rides tricycle; stands momentarily on one foot
Adaptive: Tower of 10 cubes; imitates construction of ‘‘bridge’’ of 3 cubes; cop-
ies a circle; imitates a cross
Language: Knows age and sex; counts 3 objects correctly; repeats 3 numbers or a
sentence of syllables
Social: Plays simple games (in ‘‘parallel’’ with other children); helps in dress-
ing (unbuttons clothing and puts on shoes); washes hands
Source: Ref. 27.

APPENDIX B: INITIAL DEVELOPMENTAL EVALUATION

FORM

Date completed: Informant:

Reason for referral:
Age problem recognized and symptoms recognized
A. History
1. Family and genetic history
2. Pregnancy history
3. Labor and delivery
4. Perinatal and neonatal events
a. condition at birth
b. neonatal history
88 Scherzer

5. Developmental milestones
a. head balance and control
b. smiling
c. grasping
d. transferring
e. rolling
f. sitting
g. crawling
h. walking
6. Oral development
a. feeding and sucking
b. tongue and mouth problems
c. speech onset development
d. dental development
7. Hand preference
8. Other developmental features
a. hearing
b. vision
c. sleep
d. self-care
9. Social/emotional/behaviorial characteristics
10. School experience
11. Review of systems
12. Past medical history/previous evaluations
B. Physical/developmental evaluation
C. Diagnostic Formulation
D. Plan for Management/Treatment

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4
Management and Treatment
Planning for the Abnormally
Developing Child

Alfred L. Scherzer
Joan and Sanford I. Weill Medical College, Cornell University,
New York, New York

I. INTRODUCTION

Early diagnosis of cerebral palsy will reveal an infant with significant delays in
many important areas of growth and developmental maturation long before a
recognizable pattern of motor deficit is apparent. There will be abnormalities of
tone and patterns of motor behavior that are associated with difficulties in main-
taining the body in space, restricting movement, and affecting the ability to inter-
act with the environment. The motor difficulties will lead to limitations in move-
ment that may, in time, result in fixed deficits that will further reduce function
and participation. Early diagnosis provides an opportunity to assess these prob-
lems and the individual needs of the infant, and should lead to initiation of the
habilitation process.
Habilitation must consider both management and treatment needs. The af-
fected child will, first, be unable to participate well in daily care. The parent or
guardian will have various responses to the state of the abnormal infant and will
need guidance and direction in optimal ways to effectively manage daily care.
The neuropathological state of the infant will delay progression of motor
development. Appropriate treatment is essential to reduce deficits, assist in motor
progression, and help maintain appropriate levels of physical fitness. Similarly,

95
96 Scherzer

the infant may have limitations in speech and cognitive development that must
be addressed by relevant and coordinated treatment programs.
These needs and unique requirements can be best appreciated through con-
sidering the consequences of abnormal neurological development in the infant
starting life with cerebral palsy.
Review of current treatment options for children in this age group can then
be considered in the broadest developmental perspective.

II. CONSEQUENCES OF ABNORMAL NEUROLOGICAL

DEVELOPMENT
A. Discordant Neurological Maturation
As we have seen, a nonprogressive deficit of the CNS may initially affect the
brain stem and influence tone, as well as expression and integrity of primitive
or postural motor patterns. Motor development and sensory response may equally
be impaired. There is considerable variability in the expression of these deficits
and uneven developmental growth is frequent. Thus, a child may respond reason-
ably well to the environment, yet be extremely floppy and demonstrate exagger-
ated primitive motor patterns. Variable maturational strengths and weaknesses
are often a source of confusion in determining whether the child is normal or
possibly has cerebral palsy. The apparent discrepancy in response, movement,
posture, and patterns of motor behavior are often the initial basis for a parental
concern.
The uneven nature of neurological maturation may also become more ap-
parent with physical growth. Varying combinations of deficit may be encountered
including floppy or exaggerated tone, immature posture, and abnormal motor
patterns. Often these characteristics will be present in association with emerging
motor problems or asymmetry. Such children are a puzzle to parents. They have
some strengths but seem unable to progress in the usual stages. Or perhaps they
are seriously limited in all areas, but from time to time seem to be making some
progress, only to fall back and again be the cause for concern. This pattern may
be the basis for initial anxiety, often the reason for referral, and generally at the
root of tension that may greatly influence family relationships.

B. The Influence of Abnormal Tone

Excessive floppiness or stiffness of the young child may often be the precipitating
cause of concern by the family. An intuitive sense of abnormality frequently
Management and Treatment Planning 97

occurs when the child is somehow recognized to be too flexible and difficult to
handle or too rigid to accommodate in various usual positions.

1. Hypotonicity
Hypotonicity is associated with postural limpness and generally severe head lag.
Often head, neck, and trunk control are also poor. Difficulties in handling and
positioning the child are apparent early. This is initially seen in finding a comfort-
able, secure posture for feeding, whether by breast or bottle. There is excessive
head lag and considerable support is generally necessary for the neck and trunk.
This is true in a variety of postures including burping, dressing, bathing, and
carrying the child. Floppy infants are immediately at a disadvantage also because
they are greatly limited in their physical ability to maintain a secure posture in
which to interact with the environment. This limitation could be the start of a
long unbroken period of deprivation of contact and stimulation that may add to
existing deficits.

2. Hypertonicity
Hypertonicity may have similar effects on the child, contact with family, and the
environment. It differs in that excessive stiffness is more likely to be viewed as
obstinacy by the parent or may be considered causally related to irritability. The
possibility of a behavioral factor and emotional stress could thus be introduced
early to complicate the picture further. At times, the stiffness enables some degree
of ‘‘standing’’ at a very early age and may lead to the erroneous conclusion that
the child is excessively mature and advanced in development.
Often tone will change greatly as the infant develops. As indicated in Chap-
ter 3, it is not infrequent for the infant with hypotonia to later develop spasticity,
or for the infant with initial hypertonus to appear ultimately as a child with dysto-
nia. Change in tone patterns further confuses the daily problems in management.
This is particularly true when the family is sensitive and responsive in adapting
to the child.
There is often variable tone of the trunk and extremities. A hypotonic trunk
may be associated with stiff upper extremities as seen in dystonia. Change in
position may affect this relationship as well as postural motor patterns. The effect
is to present much perplexity and many frustrations to those who deal with the
child on a daily basis.
Finally, as the infant grows and matures, abnormalities of tone will increas-
ingly restrict muscle range and movement. The resulting muscle contractures,
particularly in the child with spasticity, will further restrict movement and func-
tion (1).
98 Scherzer

C. Sensory Deficit and Function

1. Visual
The infant with visual impairment may have a peripheral deficit such as cataract,
congenital glaucoma, or other structural eye anomaly. On the other hand, the
deficit may be central—within the optic tract—or may involve the optic cortex
and result in some degree of cortical blindness. Both types of lesions may also
be present. The effect of visual deprivation will be closely related to the complex-
ity of involvement. An intact child with peripheral visual loss alone will obvi-
ously not respond to visual stimuli, but will respond to other sensory modalities.
In this situation, it may be more difficult to identify early that sight is impaired
since the child may interact fairly well with the environment.
A central lesion affecting vision is more likely to be associated with other
sensory or motor deficits that limit the child’s interaction with or appreciation
of the surroundings. The limited overall reaction of the child may call attention
to developmental abnormality at a very early age. While the infant may not see
in either case, the presence of a peripheral lesion alone does not necessarily block
other avenues for contact and learning.
Visual cues expected early, such as parental recognition, are missed ini-
tially, although a smile or verbal response to contact may occur. Within a fairly
short time, the lack of visual response in feeding confirms the underlying parental
anxiety. If a central lesion is present, there are likely to be associated abnormali-
ties of tone and reflex behavior as well, further affecting development. At times,
it may be quite difficult to determine on observation alone whether visual loss
exists, either because the child otherwise interacts well or is totally globally lim-
ited. Examination by electroretinography or visually evoked electroencephalogra-
phy (EEG) may be indicated to ascertain retinal function (2).

2. Auditory
Auditory loss is comparable in potentially restricting major environmental con-
tact and the stimulation needed for early development. Extent of overall effect
relates to the complexity of deficit, ranging from conductive and sensorineural
to central lesions involving auditory pathways. Often hearing loss is not clinically
recognized early and also may not be adequately considered in the globally in-
volved child who interacts poorly. A variety of diagnostic procedures may be
utilized to delineate the condition, including galvanic skin techniques (3) and the
auditory-evoked EEG (4).
Recent data on hearing loss and emotional and social development confirm
a much wider effect than had previously been recognized (5). This effect may
be beyond the physical and developmental deprivation experienced as a result
of limited environmental contact.
Management and Treatment Planning 99

3. Other Sensory Deficits

The effect of tactile, proprioceptive, and gustatory loss on the young child has
yet to be fully identified. One may speculate that individually, or in conjunction
with a more complex central lesion, they each could contribute to further depriva-
tion and raise the issue of an appropriate remedial approach. Perceptual and cog-
nitive deficits, as seen in children with learning disabilities and mental retarda-
tion, respectively, are limiting factors that restrict the child’s options for
experience and learning. Those children with the greatest deficit have the least
resources to utilize other strengths for development. The child who is more mildly
involved, however, may be able to use other abilities effectively. Early identifica-
tion of limitations in these areas is more difficult, and the question of how to
remediate effectively remains open.

D. Abnormal Motor Patterns of Behavior and Deprivation

In conjunction with other initial neurological deficits, abnormalities of primitive
and postural motor patterns may become major limiting influences on develop-
ment. The child who roots and sucks poorly will feed poorly. Indeed, a first
indication of deficit may be expressed as ‘‘colic’’ and irritability associated with
the feeding process related to poor sucking and swallowing, with air trapping
and inadequate intake. A strong asymmetric tonic neck will limit reaching out,
bringing the hand to the mouth, and having contact with textures, shapes, and
objects in the environment. Rolling from supine will be delayed or difficult, and
progression to sitting, crawling, and ambulation will be greatly impeded. Simi-
larly, persistence of the tonic labyrinthine, with associated truncal extension, will
delay and limit sitting. Crawling will be restricted by a persistent symmetric tonic
neck pattern in which position of the head and upper extremities correspond so
that extension of the head will result in extension of the upper limbs and may
obstruct movement. Strongly active and continued primitive motor patterns will
also influence parents’ ability to perform child-care activities. Marked influence
is inevitable on positioning, holding, bathing, dressing, and feeding because of
abnormal postures and associated easily elicited motor pattern responses. The
implications for management as well as parent–child interaction are obvious and
far-reaching. The continued active influence of these and other primitive motor
patterns serves to ‘‘trap’’ the child in an immature state and intrinsically limit
possibilities for self-initiated contact with the environment. Thus, by virtue of
the early neurological defict, the child suffers deprivation of experience and possi-
bly social interaction as well. These problems exist in addition to frequent physi-
cal limitations in tone abnormalities and specific motor disorder.
For the slightly older child, similar concerns relate to delayed or incomplete
appearance of the postural motor patterns. Late neck and body righting restricts
100 Scherzer

efforts to roll, sit, and crawl. Limited or incomplete righting reactions affect trunk
control, weight bearing, and walking. Here, too, delayed expression of motor
patterns occurs in conjunction with other function-restricting neurological deficits
that impair the ability to interact with and actively participate in the environment.
These deficits have an immediate and continuing impact on the child’s
ability to learn actively from the environment and participate in the process of
socialization. Hence, the child with neurologic impairment may remain passive,
dependent, and out of active contact unless his or her specific developmental
needs are recognized and an active stimulation process is individually con-
structed. Implications for both education and socialization of the affected infant
relate directly to the inherent restriction from the very beginning of development.

E. Specific Motor Abnormality: Posture and Movement

The child with a focal motor lesion, such as hemiplegia, may show signs of
asymmetry. This may be apparent in limited expression of the Moro or startle
response. Paucity of movement on the affected side will be seen as the infant is
handled, positioned, and dealt with in all areas of child care.
More subtle and generalized motor limitations may be present and will
affect movement and affect progression toward the upright posture. Moreover,
the normal progression from the initial obligatory symmetric movements to vol-
untary, asymmetric, and localized ones will be delayed (6). The presence of actual
motor signs and restriction will be associated with deficits of tone and patterns
of motor behavior. Such a child may well be further limited in physically moving
effectively in the environment, increasing with growth as the persistent limita-
tions of muscle stretch and movement result in muscle contracture (7). Depriva-
tion of environmental contact and inability to participate actively in surroundings
are serious consequences that may further affect the child’s development.

F. Oral Development Deficits

Of the many parameters impinging on early maturation, oral development has
perhaps the most far-reaching influence. Many dimensions must be considered
and full details of evaluation are delineated in Chapter 6. The rapidly emerging
literature in this field gives some indication of the extensive areas that must be
considered (8–11). From a functional point of view, the initial concerns relate
to abnormality of rooting and sucking motor patterns, with frequent concomitant
inadequate swallowing mechanism. This problem is not unusual when associated
with fixed CNS deficit. Inefficient feeding with poor intake and frequent air trap-
ping often results, accompanied by marked irritability and the infant’s inability
to be satisfied. This clinical picture is often confused with ‘‘colic’’ and may result
Management and Treatment Planning 101

in frequent formula changes or alterations in breast feeding. In fact, this pattern

is often the first ‘‘soft sign’’ that neurological abnormality exists, and will call
for changing the approach in handling, positioning, and managing the child.
As the child grows, the oral development problems may involve inability
to chew and swallow solids or to drink from a cup. Complicated multiple deficits
in taste and proprioception of tongue, lips, and jaw may all play a part (12).
Restrictions in head, neck, and trunk control may further limit maintenance of
the upright posture in sitting, which will affect the infant’s ability to participate
actively in the feeding process (13).
Abnormality in development of speech itself relates to hearing, intelligence,
development of receptive and expressive language, integration of motor mecha-
nisms of the tongue, palate, lips, and associated musculature (14). Maturation of
the breathing pattern from initially nasopharyngeal to predominantly abdominal
in the young infant, to thoracic in the normally developing child, may also be
impaired and affect the speech mechanism (15).
Thus a fixed CNS lesion may influence all areas of oral development
through direct effect on the structures of the oral cavity itself, as well as indirectly
through abnormality of tone and patterns of motor behavior involving the head
and neck. The major consequence is a restriction of normal active experience
with the mouth, its relation to other parts of the body, and to the surrounding
environment. As in other areas already discussed, the net effect is to place the
child at an experiential disadvantage; to make him or her a passive participant;
and to compel a role of dependency. In this sense, the neurological lesion serves
to entrap such children at an immature stage where they may remain unless some
active intervention process alters their relation to the environment.

II. MANAGEMENT AND TREATMENT CONSIDERATIONS

The functional consequences outlined above provide a perspective that must also
be considered in planning for the daily needs and treatment requirements of the
infant. As well as a systematic examination of the neurological and develop-
mental levels, particular attention must be directed to problems in child manage-
ment arising out of the deficits identified in the evaluations. For example, persis-
tent primitive motor patterns and hypotonia will have obvious consequences for
posture, movement, and motor development. They will also affect many aspects
of daily care of the child for which the parent will require management assistance
and guidance. Appropriate daily care procedures will have important conse-
quences for infant interaction with the environment and for learning, and must
be given equal consideration with the specific treatment procedures that are un-
dertaken.
102 Scherzer

A. Management Assistance
Management concerns should cover at least the following major areas: handling,
positioning, and daily care, including, bathing, dressing, and feeding.

1. Handling
Handling refers to awareness of special requirements for carrying the child, for
adequate support, and for supervision necessitated by abnormalities of tone, mo-
tor behavior, or motor limitations. Various postures may exaggerate abnormal
tone or accentuate immature motor patterns, for example. Others may enable the
child to assume a more physiological pattern yet be consistent with the tasks
required of the parent, and these need to be emphasized.

2. Positioning
Positioning is similar but relates to specific adaptations that may be necessary
in order to deal with the child. What is the best position, given the specific limita-
tions, for cleaning, bathing, dressing, or feeding? The individual needs will deter-
mine how these can best be accomplished and simultaneously promote the level
of development.

3. Daily Care
Daily care includes all of the demands for infant management that are made more
stringent when the child is developmentally delayed. Physical organization of
equipment and space is a primary consideration with special attention needed for
adaptations of crib, high chair, layette, bathing, and other equipment (16). Where
there are problems of positioning and handling, the parent must be aware of steps
that can be taken in preparation for care and of how the child can be helped to
be a more secure participant.

(a) Bathing. Bathing is a good example of a daily activity requiring

special handling and positioning for the infant. Without adequate preparation,
the child may be totally unstable for support and sitting in a wash basin or tub,
which could lead to an increase in tone and exaggeration of startle or other primi-
tive motor patterns. Moreover, under these circumstances, a potential opportunity
for positive contact with the environment and learning could be lost. A more
optimum experience could be achieved with stabilization of the child from behind
in a midline position. A safe, upright posture would then enable comfort and
freedom of the arms and trunk, allowing the child to participate actively in a
more productive learning and socializing experience.
Management and Treatment Planning 103

(b) Dressing. Dressing, similarly, is an essential activity with many op-

portunities for interaction between parent, child, and the environment. Problems
of abnormal tone and pathological motor patterns, for example, could totally
influence the effect of this activity. Specific attention to details of positioning,
handling, and movement patterns as dressing is performed will enable guidelines
to be formulated for the best possible dressing experience. As with other areas
of management, a guiding principle should be to assist the child to a secure posi-
tion so that the youngster can observe and participate actively, if possible, in the
entire process. For example, it may involve obtaining supported seating, so the
child can be guided from behind when putting on articles of clothing (17). Func-
tional evaluation must provide an insight into the child’s specific deficits that
have to be considered in working toward this goal.

(c) Feeding. Feeding is the child’s most complex functional activity. It

directly incorporates problems of tone, posture, motor abnormality, and patterns
of motor behavior with the head, neck, and oral mechanisms. As with other areas
of management in the infant diagnosed with cerebral palsy, specific associated
abnormalities must be identified as they relate to the normal feeding process (18),
or where tube feeding is required (19, 20). In either situation, the goal is to afford
a positive, active experience for the child, to enable ease of care, as well as
maximize potential for learning and social development. Specific management
and treatment techniques concerned with feeding are reviewed in detail in Chap-
ters 8 and 9.

B. Current Treatment Options

1. Therapy
For the infant and young child up to age 3, the treatment of choice most frequently
is a therapy program. The starting point is a detailed evaluation of tone, patterns
of motor behavior, motor and sensory status, and posture conducted by the physi-
cal and occupational therapist upon referral following diagnosis. In addition, in-
volving an interdisciplinary team including speech therapists and early education
specialists is essential for evaluation and early intervention planning (21). The
evolving dynamic systems approach now increasingly focuses upon improving
function and maintaining physiological conditioning, rather than primarily at-
tempting to change abnormal neurological motor patterns (22).
In the actual management/treatment situation, the approach of the therapist
should be as advisor or coach to caregivers, emphasizing daily carryover at home.
The aim is to help develop compensatory mechanisms that will enhance the
child’s function. Suggested evaluation procedures are outlined in detail in Chap-
ter 6.
104 Scherzer

(a) Overview of Therapy Methods. Definitive approaches to therapy for

the young child with cerebral palsy have been evolving since the turn-of-the-
century attempts of Jennie Colby (23). The trend toward very early diagnosis
and intervention has greatly shifted initial emphasis away from orthopedic sur-
gery and placed priority on global remediation of the existing developmental
deficits, building on strengths, use of technology, and much more emphasis on
cognitive needs. The physical therapy modalities in current use reflect a contin-
uum of approaches that have evolved over the past 50 years or more for some
and more recently for others (see Chapter 5). Unequivocal benefit or superiority
of any given method, including those now based on the most recently evolved
dynamic systems approach, has not been clearly established by current follow-
up studies (24–26). However, there are data on the relevance of therapies in
providing family support (27) and their potential for strengthening and main-
taining physiological function (28, 29). In addition, there are increasing data on
multimodal early intervention programs in effecting developmental change (30–
32). Chapters 6 through 9 will deal with the therapeutic approach to the young
child, with particular emphasis on function.

(b) Early Intervention Programs. Treatment of cerebral palsy by defi-

nition must deal with the developmental needs of the child with multiple handi-
caps. The areas of disability go far beyond motor development and maturation
alone. Moreover, there are finite limitations in what can practically be expected
of therapy programs as the child grows and develops. Therapy should be offered
as the earliest approach to habilitative treatment, but is now among many other
available modalities that have been shown by past experience to be acceptable
for the complex needs of the growing child (33). Moreover, emphasis has shifted
from a concentration on individual systems of treatment modalities to widespread
programs of early intervention that incorporate physical, occupational, and speech
therapy with infant/childhood development and early education methods (34).
These early intervention programs for cerebral palsy and other developmental
disabilities are now proliferating within the United States and throughout the
Western world. The models vary considerably; some are home-based and totally
individualized, while others utilize group methods with therapists and educational
specialists in a center-based setting. The current United States Individuals with
Disabilities Education Act (IDEA) of 1997 (PL 105-17) has provisions enabling
early intervention programs for children up to age 3 in all 50 states (35). It is
the result of a progressive involvement of younger children from legislation dat-
ing back to the Education for All Handicap Act of 1975 (PL 94-142) (36).
The early intervention programs offer the earliest form of special education
for the child and a major opportunity for active involvement of the parent. When-
ever possible, the therapy program should be integrated into such a total educa-
tional effort enabling contact with other infants and families. This contact can
Management and Treatment Planning 105

greatly influence early learning and social maturity of the child and provide the
support and direction needed by many families (37) (Chapter 9). However, cur-
rent data do not demonstrate long-term effectiveness of early intervention in
maintaining developmental change. This may reflect the need for more intensive
exposure, especially to families requiring considerable information and support
(38). How these early intervention programs further develop and are used, and
their relationships to other types of intervention, will depend upon needed
changes to improve long-term effectiveness as well as availability.

2. Adaptive Equipment
A variety of assistive and functional aids are available to be used in association
with therapy programs for the infant and very young child. The prone or supine
stander, corner chair, feeding chair, other adaptive seating arrangements, sensory
and motor stimulating toys, and specialized feeding equipment are a few of the
many innovations that both the therapist and the parent can use to deal with
individual requirements. Such equipment is increasingly being devised with an
awareness of its potential value in assisting with daily living (39) and in motor
development. Considerably less emphasis is now being placed on use of standing
tables and other rigid, essentially passive, structural devices that merely contain
the child.

3. Orthotics
The use of orthotics in cerebral palsy has a long history and was often employed
alone as the definitive modality because of obvious clinical benefit. Tardieu, for
example, showed that there was no progressive contracture of the soleus muscle
when an ankle foot orthosis was worn for at least 6 h daily (40). However, the
use of orthoses as a treatment procedure in itself is not usually recommended
today since experience has shown they may be restrictive, passive, and without
maximum benefit unless part of an active therapy program (41). Current practice
emphasizes the initial use of therapy to help achieve functional head control,
sitting, and weight bearing. With growth, restriction in range of motion, and per-
sistent functional dependence, many clinicians would then consider offering some
form of orthotic for the lower extremities in the hope of overcoming deforming
forces, preventing contracture, and stabilizing posture and gait (42). As an adjunct
to therapy or in conjunction with orthopedic surgery procedures, the use of ortho-
ses can effectively maintain position and improve function (43, 44). Complemen-
tary use of therapy and orthoses need not be in conflict, but may be mutually
supplemental in helping to achieve functional development. It should be kept in
mind that orthoses have a definite effect on sensation as well as motor function-
ing. Also, their use should be task oriented (i.e., in sitting, standing, or weight
106 Scherzer

bearing). Functional orientation will enable better integration into the overall ther-
apy program.

4. Inhibitive Casting
Inhibition or serial casting can be used effectively as an alternative or in conjunc-
tion with orthotics in the growing infant (45). The child with an obvious hemiple-
gia, for example, might be a suitable candidate for initial serial casting to prevent
or reduce contracture and enable earlier weight bearing. The use of an ankle-foot
orthosis (AFO) could precede or follow a trial of serial casting, depending on
clinical circumstances. Again, there need not be conflict with a therapy program
if functional goals are clear (46).

5. Mobility Aids
As the child progresses toward weight bearing and ambulation, appropriate use
and progression to walkers, crutches, and canes must be carefully considered. In
addition, shoe insert orthoses may be very useful in compensating for foot defor-
mity and stabilizing gait (47).
Wheelchairs are also becoming more functional. Many types are now avail-
able and are suitable for even very young children. They offer better maneuver-
ability and ease of handling for the parent, together with improved stability for
the child. Use of manual or powered wheelchairs augment mobility and provide
self-controlled locomotion that can promote a greater degree of independence,
reduce feelings of helplessness, and increase possibilities for socialization and
opportunities for cognitive development. Children as young as 18 months have
demonstrated ability to learn to use powered mobility quickly and safely (48).
With active involvement in a therapy program, there is less concern about early
dependency on a wheelchair, especially if it forms part of a functional treatment
program.

6. Orthopedic Care and Management

In conjunction with other medical specialists and therapy staff, the orthopedist
should provide early guidance and direction in the use of conservative ap-
proaches, such as serial casting and orthoses, to limit or prevent motor abnormal-
ity, and the use of special equipment (49). As the child grows, limited orthopedic
surgical procedures may be considered in this age group, including adductor
lengthening to prevent hip subluxation and dislocation, and possible gastrocne-
mius lengthening for the severely deformed foot (50). In general, orthopedic sur-
gery should be avoided until gait matures (51). Because of the enormous potential
for growth in the infant and child up to age 3, the judgment of when and how
Management and Treatment Planning 107

extensively to operate is the key to proper orthopedic care. Early and continuous
involvement of the orthopedist with the child provides the best hope for the most
realistic and appropriate future surgical intervention.

7. Treatment of Spasticity
The last several years have seen the emergence of medical and surgical ap-
proaches to improve or correct the motor deficit in cerebral palsy itself. The
emphasis has been primarily on spasticity (52), but some attempts are being fo-
cused on dystonia as well (53). The extent to which this type of treatment will
result in functional change remains to be seen. Indications for use in the actively
growing infant up to age 3 are yet to be well established, and clearly require
broad clinical standards of uniformity and consistency.

(a) Oral Medication. The use of drugs given orally to alter the motor
deficit of childhood cerebral palsy and improve movement has a relatively recent
and generally unsuccessful history (54, 55). Their use with infants and young
children under age 3 is not generally recommended, and has usually been limited
to patients in at least the later preschool years. However, one experienced group
has reported them to be helpful in conjunction with therapy and to improve ease
of care (M. Barry, personal communication, 1999).
The ability of oral baclofen to significantly reduce spasticity has been seri-
ously questioned (56), and it has shown definite central nervous system side ef-
fects, including lethargy and irritability, in some children (57). Intrathecal baclo-
fen (ITB), on the other hand, is now being widely used in reducing spasticity in
generalized cerebral palsy, but there is little experience at the preschool level
(58). See below for further discussion of ITB.
Dantrolene sodium has generated conflicting claims of benefits and may
be associated with weakness and possibly serious liver dysfunction (59, 60). Its
use in childhood cerebral palsy has not been demonstrated to be effective (61).
Tizanidine, which has been used to reduce spasticity in spinal cord injury
(62) and in multiple sclerosis (63), has been introduced recently to reduce muscle
tone in the child with cerebral palsy (64). There are no studies regarding its use
in patients with cerebral palsy at this time, and it is not approved for children
under 12 years of age. Its many serious side effects, including lethargy, hallucina-
tions, and liver damage, have been documented previously (65).
Tranquilizers, such as chlordiazepoxide and diazepam, have been used with
some effect in relieving increased tone and movement, particularly in the older
child with dystonia (66). In conjunction with an active therapy program, tranquil-
izers are considered by some to be a useful and a temporary adjunct (67).
A variety of muscle relaxants have also been tried in this age group with
little benefit (68). As with all of the oral drugs available, none can be documented
108 Scherzer

to offer effective and sustained relief from motor, tone, and postural deficits by
itself in the infant up to 3 years of age.

(b) Neurolytic Blocks. A variety of local blocking agents have been in

use for many years in temporary management of focal spasticity, including 45%
alcohol and 4 to 6% aqueous phenol (69). Phenol blocks may be difficult to
administer, can be painful, and are associated with numerous complications. The
effects, however, may last up to 9 to 12 months (70). The more recent advent
of botulinum toxin A has led to its widespread use as a neurolytic blocking agent
in cerebral palsy.
Botulinum toxin A. Since the nineteenth century, the toxin produced by
the anaerobic bacterium, Clostridium botulinum, has been identified as the caus-
ative agent of botulism (71). This often deadly infection occurs following inges-
tion of contaminated food or as the result of a wound infection. The discovery
in 1949 that the toxin acted through blocking neuromuscular transmission (72)
has led to its purification as commercially available botulinum toxin A. Initial
success with its use in strabismus (73) has stimulated application to a wide variety
of abnormal neuromuscular conditions. Selective intramuscular injection of botu-
linum toxin A has now been shown to be effective in short-term (12 to 30 weeks)
reduction of spasticity in children with cerebral palsy (74, 75), as well as in
prevention of contracture in the experimental animal (76). In children with spas-
ticity, botulinum toxin A has been shown to delay shortening of the gastrocne-
mius muscle, and may have a role in delaying early orthopedic surgery (77).
Similar effect on hip adductors, with possible reduction in hip subluxation, has
also been suggested (M. Barry, personal communication, 1999).
At the present time, its use with individually affected muscle groups is
being refined in relation to other nonsurgical treatment components including
physical therapy, occupational therapy, use of orthotics, and serial casting (78).
The decision to employ botulinum toxin A in conjunction with limited orthopedic
surgery in this age group (see above) remains a matter of individual clinical
judgment. However, potential for rapid changes in motor deficits with growth
alone raises concern about its use in children up to age 3. Other limiting factors
include the potential for pain, bruising, and weakness (79) and the short-term
effects that necessitate repeat procedures. Its use under 18 months of age is con-
sidered to be contraindicated by one experienced group (80), but has been suc-
cessfully tried with hamstring spasticity as early as 12 months (81). Other groups
have no age limit and use botulinum toxin A selectively for individual muscle
groups where needed, as in a 4-month-old with torticollis (82). The manufacturer
refers to ‘‘juvenile cerebral palsy’’ as the treatment focus (83), but the U.S. Food
and Drug Administration (FDA) has not yet approved this indication. At the
present time, the consensus among clinicians is to employ botulinum toxin A in
Management and Treatment Planning 109

this age group to ‘‘buy time’’ while the child grows, and before the use of perma-
nent procedures such as selective dorsal rhizotomy or orthopedic surgery.
(c) Intrathecal Baclofen. Baclofen administered intrathecally using a
pump implanted within the abdomen has FDA approval in generalized cerebral
palsy for the child older than 4 years (84). Delivery of medication is adjustable
on a continuous basis to provide central control of spasticity, but can be associated
with many side effects and complications, including the potential for seizures
(85). Clinical experience with patient selection and indications for use in relation
to other modalities is evolving at the present time (86). Potential functional bene-
fits, especially in younger children, need extensive study.
(d) Selective Dorsal Rhizotomy. A procedure that has gained consider-
able attention is selective dorsal rhizotomy (87). SDR is generally considered
appropriate for the preschool age child at the earliest (88). Using lumbar laminec-
tomy, the procedure attempts to identify and then divide out nerve rootlets that
are associated with an abnormal motor response, leaving intact those that function
normally. Intensive postoperative physical therapy is generally employed as part
of the total program. Definite reduction in spasticity is reported as compared to
the use of physical therapy alone (89). When surgery is followed by physical
and occupational therapy, improved function was noted at 12 months by Wright
(90), while McLaughlin found an equivalent improvement in mobility between
the group receiving SDR plus physical therapy, and those on PT alone at 12 and
24 months (91). One 10-year follow-up study has shown improved range of mo-
tion and gait (92). However, sustained or long-term effects are yet to be consis-
tently achieved or results regularly replicated. Weakness of affected muscle
groups is seen frequently (93), and there continue to be concerns regarding poten-
tial for later abnormal bladder function (94), lordosis, and scoliosis (95). Clearly,
it remains to be seen whether reduction in spasticity, or improvement in gross
motor function beyond therapy alone, will be sustained on long-term follow-up,
and particularly if the cost/benefit ratio is favorable for the child with cerebral
palsy.

8. Treatment of Associated Conditions

It is essential to monitor the general health of the infant and young child with
cerebral palsy, looking particularly to remediate early any conditions that may
be associated with additional deficits. Examples include seizure disorders, visual,
and hearing impairment. Anticonvulsants are mandatory in the management of
seizure disorders and must be continuously reevaluated. Eye surgery for strabis-
mus should be performed as early as appropriate to prevent amblyopia. Correction
of any hearing impairments must be considered a priority. Other types of correc-
110 Scherzer

tive procedures may be necessary and should be planned in conjunction with the
ongoing therapy program.

9. Behavior Modification
This is a system with roots in developmental psychology that is used to stimulate
new or alter previous behavior (96). A specialized aspect, biofeedback, involves
voluntary change that can even affect physiological parameters such as blood
pressure or heart rate (97). Data from the psychology literature confirm effective-
ness of the technique for many discrete types of behaviors, especially for short
time periods (98). It has been utilized in the infant with cerebral palsy to improve
head control and sitting (99), with the preschool child to overcome equinus (100),
and in gait training to develop symmetry (101). Planning the target behavior and
developing the reward or reinforcement procedure requires a joint effort of thera-
pist and psychologist. Sometimes the procedure can be used to condition the child
to the therapy session itself to obtain better cooperation and participation. The
technique may have much to offer in a broader way than presently recognized
and deserves wider application. For example, its use in dealing with self-abusive
or other unacceptable social behaviors is increasingly apparent (102). This type
of behavior may be seen in children with various levels of mental retardation
and organic brain deficits. It can greatly affect management both in the home,
therapy, or school situations, and referral for an appropriate behavior manage-
ment program should be considered part of the total interdisciplinary approach
that can be offered.

C. Social and Mental Health Services

A major advantage of working with the affected infant up to age 3 is the opportu-
nity it provides for becoming totally involved with the family. Often the child
is identified only after a period of diagnostic confusion and a long search for
the appropriate referral agency. The family frequently feels anxiety and guilt.
Conflicting information and advice about care or treatment may be overwhelm-
ing. Problems concerning finances and transportation may prevent needed partici-
pation. These and other problems require an active social service program with
involvement in the home when needed. Counseling and definitive psychiatric
referral and care must also be available. Parental discussion groups in conjunction
with the therapy program can offer the support and direction to assure carryover
at home and an atmosphere conducive to growth. Professionals should not lose
sight of the fact that early appropriate supportive care for the family is the major
ingredient reported by older patients, in long-term follow-up studies, to have
influenced their functioning and development (103).
Management and Treatment Planning 111

D. Controversial/Alternative Treatments
Management and treatment programs clearly require continual use of a variety
of modalities. Timing, emphasis, and application will vary with the strengths
and orientation of professionals, outcome experience, and hopefully now with
evidence-based practice (104). Programs will differ in approach, and there will
always be some variance with parental expectation. This is a natural consequence
of continual change in technology, experience, and the realistic limitations of
what can be achieved at any given time for children with chronic disabilities. In
addition, the current universal media attention, easy access to unlimited Internet
information, and aggressive commercial interests all add to increasing demands
for more immediately gratifying treatment results. Cerebral palsy and other devel-
opmental disorders are, therefore, prime targets for controversial and alternative
treatments (105).
Some procedures are in use and may have appeal, yet are strongly ques-
tioned, because of unacceptable theory, methods employed, demands on the fam-
ily, or outcomes claimed. This is true, for example, with patterning therapy (Fay-
Doman), which has been strongly criticized (106), and not recommended for
referral by the major medical specialty societies (107).
Hypnosis has been used with older children (108) and acupuncture has also
been advocated without any evidence of meaningful benefit (109). Optometric
exercises are widely prescribed for perceptual motor deficits, coordination, and
balance, without any evidence of long-term effects (110). Diet therapy is com-
monly employed for behavioral and perceptual problems, including the Feingold
regime and use of megavitamins. Neither has been substantiated as having rele-
vance (111, 112). Vestibular stimulation has been studied in a control design and
was found to have no significant effect (113), although Chee et al. had previously
shown positive results (114). Use of neuromuscular electrical stimulation, like-
wise, remains controversial (115–117).
Hyperbaric oxygen therapy also has its proponents. A Canadian Foundation
for Hyperbaric Oxygen for Children with Cerebral Palsy (HOT 4 CP) has been
in existence since 1998. It has reported on the Internet a preliminary study of 25
children aged 3 to 8 that showed significant post-treatment functional improve-
ment with the use of 1.75 atm for 2 weeks, using the GMFM, the Jebsen test for
fine motor, and the modified Ashworth Test for spasticity (118). On the other
hand, a 1999 unpublished study at Cornell Medical Center using 1.50 atm daily
for 1 month found no significant functional benefits among a group of 24 children
with moderate/severe cerebral palsy aged 1 to 5, using Peabody testing and a
parent questionnaire (M. Packard, personal communication, 1999). No other doc-
umentation of studies is currently available.
A field dealing with chronic disability always requires the search for new
and better approaches, and there is no doubt that affected families and profession-
112 Scherzer

als are ever on the lookout for simple solutions to the complex problems of the
infant with cerebral palsy. In this quest, the basic principles of objective evalua-
tion and relevance to existing treatment must be kept in mind. As we enter the
twenty-first century, the following poem is also a reminder of the need to maintain
a historical perspective and avoid ‘‘reinventing the wheel’’:

A Short History of Medicine

‘‘Doctor, I have an earache.’’
2000 bc ‘‘Here, eat this root.’’
1000 ad ‘‘That root is heathen. Say this prayer.’’
1850 ad ‘‘That prayer is superstition. Drink this potion.’’
1900 ad ‘‘That potion is snake oil. Swallow this pill.’’
1950 ad ‘‘That pill is ineffective. Take this antibiotic.’’
2000 ad ‘‘That antibiotic doesn’t work anymore. Here, eat this root.’’
(From Ref. 119.)

III. DEVELOPING A PLAN FOR TREATMENT AND

EVALUATION

Identification of the child with significant developmental delay or with a definite

diagnosis of cerebral palsy should lead to team referral for appropriate care with-
out delay. The physician and other professionals should be familiar with relevant
resources within the community that can provide needed services, or at least be
able to refer the patient to a source of information. The present accepted practice
of early evaluation and intervention will be helpful in obtaining parental under-
standing and acceptance, even if a specific diagnostic label cannot be given. Pro-
fessional direction in finding the appropriate resource can help avoid ‘‘shopping’’
among agencies, ensure good communication, and avoid unnecessary delay in
treatment. It is also essential that, following referral, the physician maintain active
contact with the treatment agency to enable close follow-up of the patient and
guidance for the family.
The referral for therapy is essentially a team undertaking and should include
the basis for concern, diagnosis, if possible, specific functional evaluation, and
need for further workup. First consideration should be given to management prob-
lems to assist the family with daily care of the child. A full examination of sensory
and motor development would then be expected so that the child can be placed
in an appropriate treatment program. The elements of management and treatment
should both be included to ensure the most appropriate planning for the atypically
developing child.
Generally, the local medical society, health department, or educational au-
thority will have information concerning early intervention services for the young
Management and Treatment Planning 113

child. Search of the Internet will also enable reference to a multitude of voluntary
agencies providing relevant services.

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6. Blasco PA. Normal and abnormal motor development. Ped Rounds 1992; 1:1–6.
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5
Historical Perspective to Current
Practice
Habilitative Services

Margaret J. Barry
Department of Physical Therapy, Youngstown State University,
Youngstown, Ohio

I. INTRODUCTION

Therapy for children with cerebral palsy (CP) began almost 100 years ago. Treat-
ment has evolved from focusing on impairments (such as spasticity and con-
tractures) to activities (such as walking), and then to considerations of participa-
tion (such as a child’s family role as a sibling) (1). The assumption that ‘‘more
is better’’ guided therapists in the past, but today there is more judicious use of
resources and implementation of services. The concept of family-centered care
has changed the paternalistic role of the medical team forever. In the past, the
therapist determined the goals of treatment; today, the child and family identify
their goals and direct their programs based on the family’s needs. Over the years,
therapists have implemented a great variety of treatment interventions with differ-
ent theoretical bases. There are few clear standards of care. The move toward
evidence-based medicine means careful analysis of the best available evidence
combined with clinical judgment (2) to determine the most appropriate care for
an individual child. This chapter provides a historical perspective of therapy inter-
ventions, from past to present, allowing us to understand where we have been,
where we are, and where we are going.

121
122 Barry

II. EARLY HISTORY OF THERAPY IN THE

UNITED STATES

Jennie Colby, a gymnast, was among the first to initiate physical therapy for
children in the United States at Children’s Hospital in Boston. She used massage
and exercise to help a variety of patients with movement disorders. Her tech-
niques were incorporated into the treatment approach of the neurologist Bronson
Crothers (3). Crothers believed active movement and stimulation were key con-
cepts, even for children with severe involvement. He supported the idea of inde-
pendence and individual treatment plans. Winthrop Phelps, an orthopedic sur-
geon, went on to further expand the idea of interdisciplinary treatment (4). In
the late 1930s, Phelps developed a pediatric rehabilitation center in Maryland.
The center followed a team approach, with specific functional goals for treatment
set by the team. All treatment began with relaxation and progressed to active
movement. Phelps emphasized the use of strengthening and massage, as well as
rhyming activities to promote active movement. He felt that the use of orthoses
was important in maintaining appropriate alignment and promoting control. As
control developed, the level of bracing decreased. His teams were innovative in
their use of adaptive equipment to maintain postural control and to assist with
functional tasks. Many of the concepts that Phelps promoted continue to be seen
in today’s practice.
Another pioneer in the treatment of children with CP was a physiatrist,
George Deaver (5). Deaver was an advocate for promoting functional abilities,
especially the use of wheelchairs and the performance of activities of daily living.
He also advocated the extensive use of orthoses, but moved toward less bracing
as the child developed control. Cosmetic appearance was a concern for Deaver,
and in some cases, he advocated orthopedic procedures that resulted in cosmetic
improvements without functional improvements. As the treatment approaches of
Phelps and Deaver evolved in the United States, other treatments originated in
Europe.

III. TREATMENT INTERVENTIONS

A. Neurodevelopmental Treatment
Perhaps the most renowned of all interventions addressing the movement and
posture of children with CP is neurodevelopmental treatment (NDT). The treat-
ment, developed by Karel and Berta Bobath (6), began in the 1940s. Karel was
a neuropsychiatrist, and his wife, Berta, was a physical therapist (7). Attempting
to explain the clinical observations of his wife, Dr. Bobath based his theories on
the hierarchical and maturational theories of neuroscience at the time (8). The
Habilitative Services 123

Bobaths promoted the use of handling techniques to inhibit abnormal tone and
primitive reflexes and to facilitate normal movement (6). They believed that chil-
dren with CP needed the experience of normal movement. For children unable
to move, a therapist’s hands provided the experience. Quality of movement was
considered very important. Initially, the Bobaths also used reflex-inhibiting posi-
tions to reduce the effects of the tonic reflexes. However, they later felt that these
positions limited opportunities for movement and did not change reflexes. They
believed that they had overemphasized the importance of the primitive reflexes.
Treatment progression centered on the normal developmental sequence, assuming
carryover to functional tasks. However, with clinical experience, they did not
find functional carryover.
The Bobaths continued to update their theories and techniques as they
gained experience and as additional knowledge of neuroscience became avail-
able. Today, NDT emphasizes functional goals (9). Principles of treatment in-
clude weight shifting, weight bearing, and normalizing muscle tone. Quality of
movement is still important and may reduce abnormal stresses on joints, possibly
preventing secondary impairments and deformity. Modalities include the use of
balls, bolsters, horseback riding, and swimming. Therapists combine NDT princi-
ples with a variety of other approaches, such as strengthening and the use of
adaptive equipment. An 8-week certification course is available, as well as numer-
ous shorter courses. Throughout their lives, the Bobaths stressed the importance
of parental involvement and a level of comfort in caring for the child (6). With
advances in science and clinical experience, NDT continues to evolve, making it
difficult to define and to research (see Chapter 11 for a discussion of the evidence
regarding NDT and the implications for practice and future studies).

B. Vojta
In Germany, Dr. Vaclav Vojta developed another early intervention treatment
method based on the maturational and hierarchical theories. The Vojta method,
used in Europe and Asia, never became popular in the United States. Vojta at-
tempts to activate postural and equilibrium reactions to guide normal develop-
ment (10). Reflex locomotor patterns and proprioceptive input are the basis for
treatment. The therapist develops a treatment plan that is implemented by parents.
The therapist monitors the program on a weekly basis for infants, and on a
monthly basis for older children. Treatment is uncomfortable, and children often
cry (11). A Japanese study of Vojta found that children who initiated treatment
at 3 months of age began walking earlier and with a steadier gait pattern (12).
Proponents of Vojta suggest that very early intervention does not allow the devel-
opment of abnormal crawling patterns, and subsequently promotes normal walk-
ing patterns.
124 Barry

C. Patterning
Perhaps the most controversial figure in the early history of the treatment of
children with CP is Temple Fay, a neurophysiologist. Fay believed that ‘‘ontog-
eny recapitulates phylogeny,’’ or that individual development follows the evolu-
tionary process (13). According to Fay, a child’s brain evolves as that of a fish,
reptile, mammal, and, ultimately, a human. If there is an injury to the brain,
development stops at that level of maturation. Further maturation is not possible
without intervention to stimulate the brain.
Doman and Delacato based a treatment method, called patterning, on Fay’s
principles. They suggested that patterning facilitates normal development in un-
damaged areas of the brain and leads to changes in the damaged areas, which
allows more normal movement (14). The idea of the program is neurological
organization and respiratory control. Parents who consult The Institutes for the
Achievement of Human Potential receive instruction in the very strict patterning
treatment regimen (15).
Doman and colleagues described the treatment, with different regimens for
nonambulatory and ambulatory children (14). For children unable to walk, they
spend the day on the floor in prone position, encouraged to creep or crawl. For
all children, a team of at least three adults provides patterning for 5 min four
times a day, every day. With the child lying on his stomach, the head, arms and
legs are moved in the appropriate patterns. The head is turned, and the extremities
are flexed and extended. Sensory stimulation, activities to promote dominance of
one hemisphere, and a breathing program are other components of the treatment
regimen.
This treatment is potentially harmful to children and their families (15,16).
Besides the time and expense of providing the intensive program, there are many
psychosocial issues to consider. Instead of accepting the child’s disability and
learning to cope with it, families may harbor false hope for a cure. The demanding
regimen also interferes with the child’s opportunities for appropriate social inter-
actions and overall development. In the 1980s, in separate policy statements, the
American Physical Therapy Association and the American Academy of Pediatrics
expressed concerns regarding the effectiveness of patterning and the promotional
methods of the Institutes for the Achievement of Human Potential (15). Although
there is no evidence to support this treatment, failure is blamed on the parents.
Our current knowledge of neuroscience does not support a theory that involves
the patient as a passive participant. Learning requires active involvement.

D. Rood
Rood utilized both the sensory and motor systems to facilitate movement with her
treatment techniques (17). She felt that preventing the development of abnormal
Habilitative Services 125

movement patterns was important. She used sensory input to activate or relax
muscles to promote normal movement. For example, she applied heat or cold,
along with stroking or brushing the skin over a muscle, to activate the muscle.
Movements in the developmental patterns were then encouraged for function.
Brushing continues to be utilized by some therapists, either as a method of relax-
ation or stimulation.

E. Sensory Integrative Therapy

Sensory integrative (SI) therapy, developed by Jean Ayres, is based on promoting
the organization and processing of sensory information (18). Proponents believe
that information coming into the body from the proprioceptive, tactile, and vestib-
ular systems is disorganized and not processed well. This lack of cognitive pro-
cessing is considered a perceptual problem (17). These processing problems cause
difficulties with motor planning and motor control. Therapy focuses on move-
ment and environmental awareness. The use of swings, scooters, and other mov-
ing objects helps the child process sensory input and use sensory information to
plan movement and gain postural control (18). Traditionally, occupational thera-
pists are more involved in the use of SI treatment.

F. Strengthening
As previously mentioned, Colby, Crothers, and Phelps advocated the use of
strengthening exercises. Although the Bobaths revised their opinions on the im-
portance of following the developmental sequence and primitive reflexes, their
feelings toward activities requiring a great deal of effort did not change (6). They
felt that these activities would result in increased spasticity and associated reac-
tions. Thus they did not support the use of strengthening exercises. Several re-
searchers have looked at the effects of strengthening, and no study identified
increased spasticity as an adverse effect (19–21). However, some NDT therapists
are still reluctant to do resistive exercises (20).
Herman Kabat recognized the importance of strengthening, demonstrated
by his development of proprioceptive neuromuscular facilitation (PNF). Kabat
was a physician and a neurophysiologist, interested in the treatment of patients
with CP (22). He teamed with Margaret Knott, a physical therapist, and the popu-
larity of PNF grew as she presented the method to other therapists. The technique
is hands-on, using diagonal patterns of movement to activate muscles and gain
strength and control.
Today we have evidence that children with CP are weak. One study com-
pared leg strength in children with diplegia, hemiplegia, and age-matched peers
(23). The children with CP demonstrated weakness, with the greatest weakness
in the distal muscles. In children with hemiplegia, even the less involved side
126 Barry

was weak when compared to typical children. All children in this study were all
able to walk; it is possible that weakness is even more significant in children
who are not as active.
Damiano and colleagues are strong advocates of strength training for weak-
ness in children with CP (19,24,25). They recommend using loads at least 65%
of the maximum voluntary contraction. They suggest 6-week programs, per-
forming four sets of five repetitions of each exercise, at a frequency of three
times per week. They used this protocol for 14 children with CP who gained
strength in the quadriceps, with most attaining normal strength (19). Gait analysis
demonstrated reduced crouch and increased stride length. There were only two
missed sessions for the entire program, indicating that children were very compli-
ant. Damiano’s most recent study also found improved muscle strength, as well
as improved gross motor skills and walking speed (25). These functional gains
may result in reduced disability for these children.
There is no evidence that strengthening increases spasticity. There is evi-
dence that weakness is a problem in this population of children, and strengthening
is effective in reducing weakness and improving function. For very young chil-
dren, weight training may not be appropriate, but therapists can incorporate
strengthening activities into the child’s therapy program through games and repe-
tition of functional movements.

G. Electrical Stimulation
Another treatment approach that is sometimes used for strengthening is electrical
stimulation. This treatment can be controversial. Therapists use electrical stimula-
tion for children with CP for several reasons. In addition to building strength, it
may be used to improve function, gain or maintain range of motion, facilitate
voluntary muscle control, and/or reduce spasticity. Electrical stimulation is used
in young children, but tolerance is sometimes an issue.
Most often, stimulation is at an intensity great enough to cause muscle
contraction. In the literature, there are case reports of improvements after stimula-
tion of either spastic muscles or their antagonists. In a randomized, controlled
study, investigators matched ten pairs of children with hemiplegia (26). They
stimulated the tibialis anterior muscle to increase range of motion, hoping subse-
quently to improve gait. The treatment group received electrical stimulation to
elicit dorsiflexion 1 h per day for 1 month. The researchers found increased
strength and range of motion, but the gait pattern did not change. Improvements
in the gait pattern may have required more time and therapy. The researchers
felt that electrical stimulation may be helpful in the prevention of contractures.
It may be advantageous to use this modality during growth spurts.
One of the more recent applications of electrical stimulation is termed
threshold electrical stimulation (TES), previously referred to as therapeutic elec-
Habilitative Services 127

trical stimulation. Karen Pape developed the TES method in Toronto (27), which
involves very low intensities of stimulation that do not cause a visible muscle
contraction. Treatment is done during sleep. The youngest recommended age for
beginning TES is 2 years. Children must have enough surface area to place elec-
trodes far enough apart to carry current. Safety is also a concern when TES is
being considered for the very young. Although most of the studies on TES are
case series, there was one randomized, controlled trial in children who had under-
gone selective dorsal rhizotomy. In that study, children on TES made significantly
greater gains in gross motor function than children who did not receive TES
(28). However, they found no differences in strength. Pape claims TES improves
muscle bulk, but there is no published evidence supporting this claim (27). One
of the dangers of this intervention is the presumption by proponents that the
treatment is always effective if applied as directed. Failure is blamed on the
parents, although research does not to support the notion that the treatment is
effective for every patient.

H. Stretching
Some therapists spend a great deal of time stretching tight muscles. Others incor-
porate stretching in home programs where parents perform stretching exercises
or children are placed in positioning devices, such as long-sitters, to stretch the
hamstrings. Serial casting is another method of stretching, which seems to be
effective in young children. Therapists apply a cast with the joint held in a
stretched position, as far as tolerated by the child. After a week or two, the thera-
pist removes the cast and then applies another cast, providing additional stretch.
Therapists may repeat this process until there is no further gain in range of mo-
tion, or they reach full range of motion. Casting may prevent or delay the need
for orthopedic surgery to lengthen muscles, such as the calf muscles.
One use of orthoses (braces) is to provide stretching. Tardieu and col-
leagues did a study to determine the amount of time typical children and children
with CP stretch the soleus muscle each day (29). Children’s ages ranged from 9
to 15 years; the study period was 7 months. Researchers found that, during daily
activities, five typical children spent an average of 7 h stretching the soleus. For
children with CP, those who maintained their ankle range of motion wore ankle
foot orthoses 6 h per day; those who wore orthoses only 2 h per day developed
contractures.
In terms of preventing contractures at other joints, there is not as strong a
scientific basis for appropriate intervention. More studies need to describe the
amount of stretching performed by typical children and children with disabilities
and the outcomes of stretching programs.
Orthoses are also used to compensate for deformity and to optimize func-
tion. Early in their careers, the Bobaths disapproved of orthoses and adaptive
128 Barry

equipment (30), which caused some therapists to resist using them. But eventually
the Bobaths accepted orthoses. They also felt that inhibitive casting reduced tone
and abnormal foot reflexes. Knutson and Clark (31) provide a reference for the
indications for the use of a variety of orthoses. Studies suggest ankle foot orthoses
and inhibitive casts improve stride length and balance in gait, and maintain heel
cord length if worn at least 6 h per day (29,32,33).

I. CONDUCTIVE EDUCATION

Andras Peto developed conductive education in Hungary (34,35). Conductive

education is not specifically a therapy approach, but rather an integration of cog-
nitive, motor, self-care, and social training. The conductor is the one professional
responsible for the child’s daily program, including education, nursing, and habil-
itation (34,36). The goal of conductive education is independent function without
aids or assistance. In Hungary, children must walk and function independently to
attend typical schools; thus, achieving such independence is extremely important
(37,38). In other areas of the world, intervention may focus on different goals,
depending upon accessibility for persons with disabilities. Education of the con-
ductor is a 4-year program. Conductors spend the first 2 years in a teacher training
college, then spend two-thirds of their remaining time training directly with a
conductor. There is very little formal training in occupational, physical, and
speech therapies (37).
Children initiate and carry out tasks to rhythms and songs, often working
together in groups (34,36,39,40). Ladder-back chairs and plinths are used for
functional activities (40). Conductors choose tasks that are goal-oriented and
meaningful to the child, providing minimal assistance (41). Children with severe
cognitive deficits are not considered appropriate candidates because following
directions is part of the program. Children must be capable of communication and
have some intentional function (39,40,42). Other conditions, such as uncontrolled
seizures, hearing and visual impairments, and fixed deformities are also consid-
ered contraindications (34). The residential program allows little opportunity for
family and social interaction, other than in the educational setting (35). Visitors
to the Peto Institute in Hungary report that the children and the conductors dem-
onstrate enthusiasm and enjoyment (37,39). It is not known how well these chil-
dren integrate into their communities (43), but the Peto Institute reports that 73%
of their students achieve independent function (37). The success of the program
may be due in part to their selection criteria, since they only admit children with
good potential for functional independence (34).
Conductive education is becoming increasingly popular in many parts of
the world, including the United Kingdom, Australia, Japan, Canada, and the
Habilitative Services 129

United States (42,44). Despite its popularity, there is little evidence to support
conductive education over other interventions. An Australian study randomized
children to conductive education or standard treatment and found little difference
between the groups (45).

J. Assistive Technology
Increasingly, opportunities for using assistive technology are becoming available
to very young children. Computer applications, powered mobility, myoelectric
prostheses, and augmentative communication devices have been utilized in re-
search studies (46). Infants as young as 3 months have purposefully interacted
with computers; 18-month-old toddlers have safely driven powered mobility de-
vices; and 2-year-olds have communicated with speech synthesizers.
Investigation of the early introduction of assistive technology results from
an increasing awareness in child psychology of the relationship between physical
and psychological development. When development is delayed in any domain,
other domains also suffer adverse effects. Motor skills allow the young child to
learn, socialize, and develop a sense of independence. Through motor interac-
tions, infants and toddlers learn about their environment and the concept of cause
and effect. Young children with CP who are unable to move and interact with
people and their environment tend to become passive, unable to actively initiate
and participate in experiences. With assistive technology, children have the
chance to be more successful in directly controlling their environment, and may
thereby reduce potential secondary social–emotional and cognitive impairments.
The equipment options available to families today continue to expand with
advances in technology, especially tools designed for young children. Children
with speech and language difficulties have numerous options in augmentative
communication devices. Charlene Butler supports the early use of augmentative
mobility devices in children with limited mobility (47–50). In six young children
from 18 months to 3 years of age, Butler studied the effects of powered mobility
and found increased self-initiated behaviors (50). Parents reported satisfaction
and there were positive psychosocial outcomes. In reviewing the literature, Butler
stated that ‘‘the availability of mobility options does not impede the development
of ambulatory potential, nor do children ‘give up’ walking when they have alter-
natives available’’ (47).
Despite technological advances, the emphasis on early intervention contin-
ues to be centered on the family. The family’s goals are the priority, with their
resources and needs taken into consideration. Therapists, along with other medi-
cal and educational team members, want to empower families to make treatment
decisions and plan for the future of their children with disabilities. Part of the
planning process is the consideration of treatment outcomes across many aspects
130 Barry

of life. Disablement models define dimensions for the assessment of treatment

outcomes.

IV. DISABLEMENT MODELS

There are several frameworks for considering the effects of disablement, planning
treatment approaches, and evaluating the effects of interventions. The latest
model comes from the World Health Organization (WHO) International Classi-
fication of Impairment, Disability and Handicap (ICIDH-2), which describes the
consequences of disease. The ICIDH-2 is similar to the National Center for Medi-
cal Rehabilitation Research model, which was originally adopted by the Ameri-
can Academy of Cerebral Palsy and Developmental Medicine (AACPDM) (1).
However, the ICIDH-2 model puts a more positive light on the framework, mov-
ing away from terms such as handicapped and disabled. When this revised WHO
model became available, the AACPDM incorporated its concepts and terminol-
ogy into its framework for evaluating treatment outcomes. The ICIDH-2 frame-
work covers the body level, the person, the social situation, and environmental
or contextual factors. Throughout this book, these levels will be considered in
the evaluation and treatment of young children, and the research evidence sup-
porting these interventions. The four dimensions of the ICIDH-2 model will be
introduced here, beginning at the body level.

A. Body Level
The first level is functional and structural integrity of the body, which, in a more
negative sense, is referred to as impairment. In the past, changing impairments
was the basis for treatment. Therapists believed that if they changed impairments,
the patient would demonstrate changes in function. Today there is still a concern
for body structures, but the major emphasis of intervention is functional. Thera-
pists try to prevent deformity, thus they are concerned with impairments such as
decreased range of motion. They also consider impairments, for example, de-
creased range of motion and weakness, which may interfere with functional abili-
ties.

B. Person Level
Activities, referring to functioning at the person level, are another dimension in
the framework. Tasks like walking, talking, and toileting fall under this category.
Therapists work on these tasks, but there is also a greater awareness of the envi-
ronment in which these tasks are performed in daily life. Therapists consider not
Habilitative Services 131

only walking, but also helping families decide on the most appropriate means of
mobility.

C. Social Level
Participation at the social level is the next dimension to consider. Therapists are
becoming more attuned to this dimension. Participation refers to the ability to
become involved in the situation and to carry out social roles. For instance, for
a 3-year-old boy who has a new baby sister, one role would be big brother. The
issue of social participation has been largely ignored in the past. Today, the ulti-
mate goal of intervention is minimizing disability to allow the child to participate
in society as fully as the child’s potential allows. In early intervention, the social
roles of family members are also important to consider. For instance, a mother
who is returning to school may need support in her new role as a student.

D. Environmental Level
The fourth level involves contextual factors, covering cost of intervention, accep-
tance by society of interventions such as technology, and accessibility. The preva-
lent attitude in the United States that more services are always more optimal than
fewer services, for example, may be a limitation when considered from the aspect
of societal cost.
The traditional focus on body structure and function and on impairments
such as spasticity is no longer the primary consideration in providing services.
The disablement model allows us also to consider the effects of an intervention
on a child’s functional abilities and social roles. We want to consider the young
child crawling not only in the hallway of the clinic, but also at home and in day
care. Past research rarely focused on issues of participation, but awareness of the
importance of outcomes at this level is growing (51–53).

V. Theoretical Considerations

The first theories of motor development and control were the hierarchical and
maturational theories, based on reflexes and development of the central nervous
system (CNS). Treatments such as NDT, Vojta, and patterning evolved under
this theoretical framework. Movement was thought to be the result of a stimulus–
response mechanism: a sensory stimulus led to a motor response. As the nervous
system matured, the levels of control moved from the spine to the brain stem to
the subcortex to the cortex (54). The complexity of movement and integration
of primitive reflexes depended on the maturation process. Therapy aimed to
change the CNS through stimulation. Treatment progression followed the typical
132 Barry

attainment of motor milestones, from sitting to crawling to standing to walking.

Normal movement patterns were thought to change through facilitation, and ab-
normal tone and reflexes could be inhibited. These changes were thought to lead
to independent motor control.
Dynamic systems theory is the ‘‘new’’ basis for therapeutic interventions.
This theory suggests that the nervous system is one system that influences a
person, but it is not the only system responsible for motor development and motor
control. There are numerous complex systems that interact (54). The musculo-
skeletal and sensorimotor systems, as well as the environment, are considered as
important as the nervous system. The person, the task, and the environment all
interact (55). The therapist identifies the constraints interfering with the task,
which could involve changing an impairment, modifying the task, or the environ-
ment. For example, the therapist may determine that a child may not be able to
learn to carry a lunch tray with a glass of milk, but may be able to carry a carton
of milk, so the task is modified to promote a successful outcome. In another case,
the child may need to gain strength in her arms in order to be able to carry the
tray, so a body system needs to be addressed.
The motor learning approach advocates teaching problem-solving skills, a
cognitive process (54,56). The idea of repetition is important, varying the task
to allow problem solving and learning, as the task is practiced over and over
again (55). The therapist provides feedback. The research regarding the appro-
priate amount and timing of feedback is still evolving, but random feedback that
is provided after a short delay may be most effective (57). Allowing several
seconds before giving feedback may give the person time to process the intrinsic
feedback as to what occurred before providing additional input. Intrinsic feedback
is the body’s own sensory feedback, including input from the kinesthetic, visual,
and auditory systems. The concept is the same as an athlete learning a movement
like a backhand swing of a tennis racket. The movement must be practiced, there
must be intrinsic and extrinsic knowledge of performance and results. A consis-
tent backhand swing becomes automatic only after hours, even years, of practice.
A coach may facilitate the process by providing feedback at appropriate intervals
and also providing opportunities for the person to integrate his or her own sensory
information.
This theory supports working with children in their natural environment
because the environmental system is an important component in achieving a task.
For example, working on mobility on the playground may be more effective than
working in the therapy gym. There is also the concept of a ‘‘hands-off’’ approach,
allowing children to move and learn from their own mistakes and successes.
Children initiate movement, thus the tasks must be meaningful to them. The thera-
pist must identify when a child is in a transitional state, ready to learn a new
skill, and apply the appropriate intervention at the time (58). The dynamic sys-
tems theory is influencing pediatric therapy practice. Therapists are working with
Habilitative Services 133

children in their natural environments, including the home and day-care center.
Children are being given augmentative communication and mobility devices at
an earlier age, modifying their tasks, allowing them to learn and explore their
environments. The traditional hands-on NDT approach, originally based on early
neuroscience theories, now considers current concepts of motor learning.

VI. MEDICAL TEAM APPROACH

With the increasing use of pharmacological and surgical interventions in young

children with CP, the team approach becomes increasingly important. Therapists
play an important role in the decision-making process. Therapists often know
the children and families more intimately than any other medical team member
does. These close relationships often mean that families place their trust in thera-
pists. Therapists need to be aware of the available evidence supporting and refut-
ing various interventions so that they can provide appropriate information and
advice.
Therapists have several roles in the use of oral and intrathecal medications,
botulinum toxin, and selective dorsal rhizotomy. The community therapist may
refer a family to a clinic for possible intervention to reduce a movement disorder,
such as spasticity. The therapist refers children who have involuntary movements
that interfere with function or care. For example, the child may demonstrate ex-
tensor posturing of the trunk that interferes with sitting. Or a child may be walking
up on his toes. The clinic therapist examines the child, discusses the family’s
needs and desires, and presents findings to the team. The team should make rec-
ommendations that allow for the facilitation of care, improved comfort, and/or
functional gains. If an intervention is recommended, the community therapist
needs to be aware of the decision, potential benefits and adverse effects, and
appropriate therapy to maximize the effects of the medical treatment. Good com-
munication between the clinic and community team members reduces family
anxieties and confusion and promotes optimal care for the child.

VII. CONCLUSIONS

Habilitation professionals today have a responsibility to provide family-centered

care to young children with CP. The family identifies goals and therapists provide
guidance, keeping future considerations for the child in mind. The therapist may
also provide information regarding the different types of interventions available
and the types of service delivery, such as home- and center-based treatment.
Therapy involves assisting the family with management issues in terms of daily
care as well as developing the treatment plan directed to the therapy goals. Aug-
134 Barry

mentative communication and augmentative mobility are a part of early interven-

tion, allowing children to interact with their environment, to learn, to play, to
promote self-esteem, and to reduce learned helplessness. For some children,
walking may be the primary goal, but independent power mobility may be of
greater overall benefit than limited mobility at a high energy cost. Secondary
conditions such as musculoskeletal problems are considerations in the decision
to use orthoses, assistive devices, and adaptive equipment. The goal of therapy
is not to provide a lifetime of therapy, but rather to facilitate living, enjoying the
best possible quality of life (59).
From this historical perspective, we move on to consider the practical appli-
cation of therapeutic principles in the following chapters. We also consider the
evidence for our interventions in Chapter 11 as we strive for evidence-based
practice. As we weigh the evidence, we must also take the focus of treatment
into account, including body systems, activities, and participation. The present
era of health care requires therapists to carefully discern the most appropriate
intervention in the most efficient and effective manner. We take the lessons of
our history with us as we move forward, caring for infants and children with CP
in the twenty-first century.

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58. Kamm K, Thelen E, Jensen JL. A dynamical systems approach to motor develop-
ment. Phys Ther 1990; 70:763–775.
59. Campbell SK. Therapy programs for children that last a lifetime. Phys Occupat Ther
Pediatr 1997; 17:1–15.
6
Clinical Assessment of the Infant

Gay L. Girolami
Pathways Center, Glenview, Illinois
Diane Fritts Ryan and Judy M. Gardner
DuPage Easter Seals, Villa Park, Illinois

I. INTRODUCTION

In this chapter, a model for infant evaluation will be presented. We are defining
evaluation as the entire information-gathering process (1). The potential purposes
of the evaluation process are to:
1. Determine the infant’s developmental levels.
2. Answer the family’s questions about their infant’s development.
3. Determine eligibility for early intervention services.
4. Identify the infant’s strengths and needs.
5. Gather information to use in setting goals and treatment planning.
6. Determine appropriate intervention strategies.
7. Measure progress over time
8. Obtain data for evaluation of program effectiveness.
9. Collect data for research, if applicable (2).
Assessment is a major part of that information-gathering process and may
include discipline-specific standardized testing and/or clinical observations. The
assessment data, together with the medical history, parental concerns, and reports
from other professionals, are then analyzed and used to make intervention recom-
mendations. In the infant evaluation process, the type of assessment often varies
according to the reason for the evaluation and the discipline evaluating the infant.
Both standardized tools and clinical observation have value. Standardized assess-
ments are objective, structured tools that have been validated and measure prog-
139
140 Girolami et al.

Figure 1 Model for infant evaluation.

Clinical Assessment of the Infant 141

ress over time (3–6). Each test focuses on specific performance areas and age
ranges, and has its own time frame, reliability, and validity parameters.
Clinical observations are the more subjective and flexible tools of assess-
ment. When clinical observations are done to accompany a standardized assess-
ment, quality of movement and behavior can be looked at in more depth. For
example, an infant may pass a sitting item on a standardized test, but the therapist
may have concerns about posture, symmetry, and the use of upper extremities.
Further assessment, through clinical observations in a variety of positions, may
reveal that the child has a mild motor deficit (e.g., spastic hemiplegia).
When clinical observations are used as the sole assessment tool in the evalu-
ation process, the therapist’s skills and clinical experience must be well devel-
oped. Therefore, an intimate knowledge of the performance areas of development
for both the preterm and full-term infant in discipline-specific domains is essen-
tial. Knowledge of skill expectations, quality of movement, and behaviors are
important prerequisites for the therapist.
Whether standardized testing or clinical observations are chosen to obtain
discipline-specific assessment data, the evaluation model presented in this chapter
can be of use in using the information to develop appropriate recommendations
for the infant and his family. Because there are may resources available for select-
ing and administering standardized tests, we will focus in greater detail on the
assessment process using clinical observations to obtain comprehensive informa-
tion about the infant’s sensorimotor function and developmental skills.
This model for infant evaluation is interdisciplinary. The infant is observed
by all disciplines in each position and in each activity. The interdisciplinary eval-
uation facilitates an integrated understanding of the infant’s strengths and needs,
and reduces the fatigue factor commonly observed in young infants. After gather-
ing all of the information, the professionals involved discuss their combined ob-
servations, sharing information from discipline-specific points of view. This
allows them to present unified and comprehensive recommendations for interven-
tion to the family (Fig. 1).

II. EVALUATION MODEL

A. A Model for Clinical Assessment
Assessment and treatment planning for children with cerebral palsy (CP) is a
very complicated process. Cerebral palsy impacts on a number of physiological
systems, and the therapist must have an organized model to insure that all systems
are adequately assessed. The information gathered during the assessment is used
to develop a treatment plan, set goals, design appropriate treatment strategies,
and document baseline functional skills from which to assess treatment outcomes.
142 Girolami et al.

In this chapter, we will present a model for assessment. It is based on the

disablement model developed by the National Center for Medical Rehabilitation
Research (NCMRR) (7). The NCMRR Advisory Board rejected the traditional
linear view of disability in favor of a systems approach that considers organic,
psychosocial, and environmental issues that contribute to disability.
The World Health Organization (WHO), the Public Health Service (PHS),
Institute of Medicine (IOM), and S. Naghi have also developed disability classi-
fication models. Recently, the ICIDH-2 Advisory Board of the World Health
Organization reviewed all of these models and revised the terms that best repre-
sented all aspects of their proposed systems approach. We have used a combina-
tion of both models to define the categories for our assessment process. Chapters,
6 through 9 will refer to this structure as the ‘‘Disability Model.’’ Definitions
and examples of these terms as they relate to infants with cerebral palsy will be
defined in the following sections (Fig. 2).

B. Disability Terminology Defined

1. Pathophysiology
Pathophysiology is defined as interruption of, or interference with, normal physi-
ological and developmental processes or structures. In the case of CP, one infant
may sustain an intraventricular hemorrhage resulting in spastic hemiplegia or
quadriplegia, while another infant may be diagnosed with periventricular leuko-
malacia resulting in spastic diplegia.
In another situation, a single infant may have both motor and visual or
motor and respiratory pathologies that must be assessed and addressed. These
multiple pathophysiologies may cause impairments in the motor, cognitive, per-
ceptual, or sensory systems of the infant. And, while the treating therapists do
not directly intervene at the level of the pathophysiology, knowledge of type of
injury may provide insight into the resultant impairments and assist the therapist
in determining how to best manage treatment planning and therapeutic interven-
tion.

2. Impairments
Impairments are a loss or abnormality at the organ or organ system level. Impair-
ments may be of cognitive, emotional, physiological, or anatomical (abnormali-
ties in structure or function) (8). Some of the most common organ systems are:
neuromuscular; musculoskeletal; gastrointestinal; sensory; and cardiopulmonary.
When a clinician assesses an infant, the observations result in a list of
movement patterns and descriptions of how the infant moves. To determine the
impairments and eventual treatment strategies, the clinician must take another
step and hypothesize why. Armed with the knowledge that impairments may be
Clinical Assessment of the Infant 143

Figure 2 Disability model.

144 Girolami et al.

a result of pathology in a variety of systems, the clinician mentally reviews the

systems that may be involved and hypothesizes and prioritizes potential impair-
ments that must be considered. Once the impairments are identified, the clinician
can begin to see how they interfere with function.

3. Functional Limitations/Activity Limitations

Functional limitations are defined as the restriction of ability to perform func-
tional activities. These are secondary to impairments in body structure or func-
tion. Functional limitations are atypical performance or inability to perform
functional tasks such as eating, walking, or sitting. Functional limitations are
directly related to an impairment or combination of impairments, but they are not
descriptions of movement patterns such as poor head control or thoracic rounding.
Determining the most critical functional limitations is the key, so that realistic
goals can be set with the family and intervention protocols planned to assist
the infant in achieving developmentally appropriate function. In the infant, early
therapeutic intervention may minimize the long-term effects of the impairments
and prevent or reduce disability.

4. Disability/Participation Limitations
In this model, a limitation in performing tasks, activities, and roles to levels
expected within the physical and social contexts is considered a disability. Early
referral of infants with suspected neuromotor conditions could optimize func-
tional outcomes and minimize disabilities. Also consider adaptive equipment and
assistive technology to minimize the disability.
The clinician must consider the possible resultant disabilities associated
with each functional limitation. Additionally, disabilities must be assessed within
the context of the age and environment of the infant.

5. Societal Limitations/Contextual Factors

In the disability model, this is defined as restrictions attributable to social policy
or barriers, structural and/or attitudinal, that limits fulfillment of roles or denies
access to services and opportunities that are associated with full participation in
society. Infants with CP may be exposed to societal limitations, and therefore it
is imperative that the clinician assist the family in understanding their child’s
rights. It is also important to support parents and encourage them to advocate
for their infant whether in the health care or societal arena.
Based on the disability model and definitions presented, we have developed
a framework for assessing impairments and defining functional limitations, set-
Clinical Assessment of the Infant 145

ting goals, and developing a treatment plan and intervention strategies for infants
with cerebral palsy (Fig. 3). The following sections will present an overview of
the data-gathering process and the performance areas to be assessed. Chapter 7
will focus on how all of the information gathered during the assessment process
can be used to develop goals, a treatment plan, and intervention strategies.

III. GATHERING INFORMATION FOR THE

INTERDISCIPLINARY ASSESSMENT

We are advocating that the assessment format be interdisciplinary. This can also
be called an arena assessment (9). In the arena format, physical, occupational,
and speech therapists assess the infant simultaneously. Generally, there is one
lead person handling the case, although there may be instances throughout the
assessment when each professional is specifically interacting with the infant.
The data obtained during assessment is gathered through observation and
handling. In an arena assessment, it is not practical to perform standardized test-
ing in all of the discipline-specific areas, although normative data from standard-
ized tests are often used as a guide to clinical observations of performance areas.

A. Background Data
Before assessing the infant, it is important for the evaluating team to familiarize
themselves with any available background information. This information may
include reasons for referral and medical information from other health profession-
als who have already seen the infant. Parental information can be obtained prior
to the assessment through a written intake process or telephone contact. Each of
these areas should specifically be addressed in the summary and recommenda-
tions.
It is also important to understand the birth and medical history and any
hospitalizations or illnesses that may have impacted on the infant’s development.
Current medical issues and management should also be considered. Additional
information from other health professionals who have assessed or treated the
infant should also be included.

B. Assessment Data
In this section of the assessment, data from the therapy-specific performance
areas are collected. A performance area refers to a category of functions or behav-
146 Girolami et al.

Figure 3 Multidisciplinary assessment.

Clinical Assessment of the Infant 147

iors that have something in common (10). The main performance areas for each
discipline are:

Physical therapy—gross motor functions, gait, activities of daily living and

equipment
Occupational therapy—reaching and upper extremity supporting abilities,
hand function, play behaviors, and activities of daily living
Speech therapy—communication, oral motor/feeding, respiratory, and
phonatory skills.

In the process of collecting the assessment data, each therapist should note
the strengths of the infant and the family. The infant’s responses to handling, as
well as their behavior and interactional style, are also observed. Parent input
should continue to be solicited throughout the assessment for clarification of the
infant’s responses.
Within the performance areas, each therapist observes the infant’s sponta-
neous movements, motor and behavioral responses in different environmental
contexts, and the ability to organize and perform structured tasks. Observation
of spontaneous movements allows the therapist to assess the infant’s ability to
adjust posture and alignment relative to a specific motor activity or functional
task. By altering the environmental context, the therapist is able to determine
whether the infant can adapt behavior and motor performance in novel situations.
The use of structured tasks allows the therapist to determine whether the infant
can produce the appropriate movement patterns to perform expected activities
that are not spontaneously observed.
We have just defined and discussed two of the major information-gathering
sections of this arena assessment model. The next section of this chapter focuses
more specifically on what to assess in each of the major organ systems to assist
in determining why the infant moves or behaves in a particular manner. Therapists
from each discipline may look at the various organ systems with a somewhat
different emphasis or in greater detail; however, each organ system must be as-
sessed by each of the disciplines to insure that no interfering variables are over-
looked.

IV. OVERVIEW OF THE SYSTEMS TO ASSESS

As we look at the discipline-specific performance areas, each therapist assesses

contributing factors from the various systems. These systems are looked at from
the unique perspective of each discipline and with regard to how they affect
discipline-related functions (Fig. 4). Common systems to consider include: regu-
148 Girolami et al.

Figure 4 The assessment process.

Clinical Assessment of the Infant 149

latory system; sensory processing system; neuromuscular system; musculoskele-

tal system; cardiopulmonary system; and gastrointestinal system.

A. Regulatory
Therapists evaluating the infant, must all be keenly aware of the regulatory sys-
tem and its impact on every area of development. Degangi and Greenspan (11)
refer to self-regulation as the internal capacity to tolerate sensory stimulation
from individuals, as well as from the environment. It involves the capability to
modulate the intensity of arousal experienced while remaining engaged in the
interaction/activity. The infant has an evolving capacity to self-regulate.
Als and colleagues are well known for their research concerning regulatory
function in the infant. Als’ synactive theory outlines five subsystems of an organ-
ism that are continuously interactive and interdependent in terms of behavioral
organization. One of these subsystems is regulation, and it is critical to behavioral
organization in the infant (12).
Regulation is the ability to maintain and regain well-modulated subsystem
balance. This includes behaviors that the infant uses and the facilitation that the
infant requires from the environment to achieve and sustain this balance (12).
The baby uses the other four subsystems (sensorimotor, autonomic, and state and
attention) to communicate both self-regulation and disorganization.
Regulatory dysfunction is the presence of persistent symptoms that inter-
fere with adaptive functioning (i.e., sleep, feeding, arousal, mood, and transi-
tions). Parental insights relative to their infant’s regulatory abilities during daily
activities are valuable to the therapist in determining the most significant concerns
interfering with function. Some of the typical areas to observe or inquire about
include:

Sleep patterns and routines

Presence of feeding issues
Calming/coping strategies used by parents (e.g., rocking, visual distraction,
etc.)
Infant’s ability to self-calm using a variety of sensory strategies (e.g., hand
to mouth, visual and auditory attending, etc.)
Infant’s ability to handle movement transitions and position changes during
activities of daily living (e.g., feeding, bathing, etc.)
Infant’s physiological responses to movement and handling as an indicator
of state organization
Infant’s ability to attend to and process sensory input for play, transitions,
imitative behaviors, vocalizations, gross and fine motor movements, etc.
Assessment of the level of stimuli needed to elicit and sustain infant arousal
150 Girolami et al.

Visual engagement and attention to objects and to people

Any regulatory concerns affecting possibilities in other performance areas.

B. Sensory Processing
Sensory processing is defined as the ability to receive, register, and organize
sensory input for use in generating the body’s adaptive responses to human and
object interactions and to the surrounding environment (12–14). Sensory pro-
cessing is the umbrella that encompasses the sensory systems. It includes the
awareness of and the ability to orient to sensory information, as well as integrating
combinations of multisensory input for functional behavior.
When we assess sensory processing in the infant, we observe our discipline-
specific performance areas, keeping in mind the impact of the five primary sen-
sory systems: tactile/somatosensory, proprioceptive, vestibular, visual, and
auditory. The ability to use these systems to process information provides
body-oriented perception and has critical importance in the developing sense of
self (14–17). The sensory systems contribute to the planning and execution of
purposeful goal-directed movements. They are used to guide, modify, and adapt
movements to achieve desired outcome (15). In addition, these sensory systems
are important in early self-regulation and in the development of caregiver attach-
ment (16). Sensory processing is evidenced in the infant’s movement, play, and
daily living and interaction skills.
When assessing sensory processing, illnesses, tiredness, hunger, medica-
tions, teething, and other unusual, transient conditions that may be contributing
to an atypical response should be ruled out. Parent input is vital to the sensory-
processing assessment. They provide perspective on usual behaviors or concerns
experienced outside the evaluation setting. Also, it is often necessary to observe
an infant over time to discern the magnitude of the suspected areas of sensory-
processing concerns.
Infants with cerebral palsy often have sensory-processing impairments that
impact on their ability to effectively utilize incoming sensory input. It is important
for therapists of all disciplines to assess the sensory subsystems to determine
how they might impact on the infant’s ability to function in their environment.
What follows are brief descriptions of each of the sensory subsystems.

1. Tactile/Somatosensory
The sense of touch is believed to be the most mature sensory system at birth.
Receptor sites are primarily located in the skin. Touch has an important role in
balancing social–emotional security, protective versus discriminative input, and
Clinical Assessment of the Infant 151

central nervous system organization (18). Some of the typical areas to observe
or inquire about are included in Table 1.

2. Proprioceptive
This system provides information about the orientation of our body parts, our
movement, and where our bodies are in relation to gravity. It provides information
regarding force, timing, and speed of muscle contraction and movement. Recep-
tor sites are in the muscle spindles, ligaments, tendons, and joints (14,17). Some
of the typical areas to observe or inquire about are included in Table 1.

3. Vestibular
The vestibular system is considered the first sensory system to develop in utero
and is fully myelinated by 27 to 29 weeks gestation (19). Although the vestibular
system begins to develop early, it becomes mature during the first couple years
and actually continues to mature through early adolescence (18). The receptor
sites of the vestibular system are the semicircular canals and the utricle located
in the inner ear. The vestibular system registers speed, force, and direction of
head movement. It contributes to muscle tone, reflex maturation, balance, ocular-
motor, attention, and emotional state.
Together, the proprioceptive and vestibular systems coordinate body move-
ment in response to the earth’s gravitational pull (16). With somatosensory input,
these systems plays a vital role in creating the accurate body image needed to
guide the infant’s orientation to perform a task (11,18). Observations that relate
to the infant’s ability to process vestibular information are included in Table 1.

4. Visual
The visual system develops later than the three sensory systems just described
(20). It is considered the window to the brain. Unlike the other systems, vision
is a distant receptor that allows increased reaction time (21). Structural develop-
ment of rods (light perception) and cones (acuity) begins in utero during the 25th
gestational week, but oculomotor skills are not fully functional until the sixth
month of life (20).
Visual motor and visual perceptual skills become more apparent during the
sixth to twelfth month and can be assessed during play behaviors with objects/
toys or people (i.e., pointing, in/out container play, discriminating between foods,
object permanence, cause–effect, etc.). Some of the typical areas to observe or
inquire about are included in Table 1.

5. Auditory
The auditory system consists of hearing, speech and language, responses to envi-
ronmental sounds, and the infant’s ability to perceive speech and follow direc-
 152
Table 1 Sensory Processing
Tactile Proprioceptive Vestibular Visual Auditory

Does the infant tolerate Does the infant tolerate Is there comfort with and Is the head and trunk con- Does the infant alert to vari-
and/or enjoy handling, movement and position enjoyment of supported trol adequate to support ation in the pitch, tone,
dressing, and bathing? changes? movement in all planes use of vision? and rhythm of speech?
and with varying speeds?
Can touch be used as a Does the infant exhibit age- Does the infant tolerate im- Is oculomotor control age Can the infant tolerate pro-
means of comforting? expected gross motor posed weight shift? appropriate in all posi- gressing from a quiet,
skills and independence tions expected for the in- monotone voice to a
in transitional move- fant’s age including: louder, enthusiastic
ments? The ability to use the voice?
Do they demonstrate a vari- eyes to fixate, local-
ety of movement strate- ize and track objects
gies? in all fields?
Can the infant modulate sen- Use eyes together?
sory input from other sen- Dissociate eyes from
sory systems? head? (4–6 mos.)
Is the infant able to tolerate Are righting and equilib- Does the infant react to Can the infant attend to How does the infant re-
and accommodate to con- rium reactions present? weight shift with appro- visual stimulation age spond to different types
tact with various sur- priate protective or bal- appropriately? of music?
faces? ance reactions?
Is there approach or avoid- Does the infant exhibit ap- Does the infant initiate Is there any hyperrespon- Does the infant demonstrate
ance exploration when propriate anticipatory re- movement with their abil- siveness to visual stimula- attention to people
different textured objects sponses to changes in po- ity? tion such as tuning out, through

Girolami et al.
or toys are presented? sition? becoming irritable, Changes in affect, vo-
overting eyes from stimu- calization, or motor
lus, excessive widening patterns
of eyes, upon presenta- Gestures
tion of stimuli? Signs, words, or sym-
bols?
 Clinical Assessment of the Infant
Is there appropriate mouth- Is their body play and body Are head righting responses Is there hyporesponsiveness Does the infant demonstrate
ing of toys, objects, image appropriate for appropriate? to visual stimulation such attention to activity
hands, and feet? their age or motor devel- as no reaction, no move- through
opment? ment toward, or attention Changes in affect, vo-
for the visual input? calization, or motor
patterns?
Gestures?
Signs, words, or sym-
bols?
Does the infant engage in Can they initiate, plan, and Are balance and equilib- Does the infant visually en-
body exploration (i.e., sequence body move- rium responses present? gage with people?
hand to mouth, hands to ments within the limits
feet, hands together, of their motor control?
hands to chest)?
Are the reflexes (i.e., root- Can they imitate basic mo- Can a nystagmus response
ing, finger, and plantar tor movements consistent from rotary movement be
grasps) caused by tactile with their developmental elicited?
input appropriate? age?
Does the infant conform to Does the infant demonstrate Can vestibular input be
being held or cuddled? the ability to grade used for comforting, such
weight bearing through as rocking, bouncing, and
his extremities? walking?
Is there appropriate use of Can they adapt their body
the infant’s hands to ex- posture to novel situa-
plore objects? tions? Is excessive prac-
tice necessary?

153
154 Girolami et al.

tions (22). The auditory system detects aspects of sound and provides the brain
with information regarding frequency, intensity, and spatial location of sound
(23). Some infants with cerebral palsy may have hypo- or hyperresponses to
auditory stimuli. Some of the typical areas to observe or inquire about are in-
cluded in Table 1.
Additional inquiries regarding sensory processing that is not specific to any
one sensory system (and not included on Table 1) are:

1. Has the infant been exposed to unusual or negative sensory experiences

that may affect behavior, but are not true sensory processing impair-
ment?
2. Do motor abilities/concerns affect sensory processing?
3. Does sensory processing impact on motor performance?
4. Do the infant’s sensory responses affect regulatory behaviors?
5. Does the regulatory system affect sensory experiences?
6. Do the infant’s sensory responses affect interactions?
7. How often are any atypical responses elicited and under what circum-
stances?
8. How atypical is the response?
9. Can atypical responses be managed with specific structuring, environ-
mental alterations, or handling by the therapist, parent, or other care-
givers?

In summary, processing information from the five primary sensory systems

(tactile, proprioceptive, vestibular, visual, and auditory) collectively contributes
to the development of body scheme and the ability to organize and plan move-
ment. It also impacts on regulatory and emotional development (16). In addition,
the sensory feedback generated by the movements themselves permits adaptation
of motor actions to changes in environmental and task demands. This, in turn,
facilitates motor learning (24). Clearly, the importance of sensory issues tran-
scends all disciplines and all should be assessed.

C. Musculoskeletal
Even though the pathophysiology occurs in the central nervous system, impair-
ments may develop in the musculoskeletal system (25). Exaggerated stretch re-
flexes, muscle hypoextensibility, and insufficient force production are major
impairments in the muscular system and can lead to abnormal postural align-
ment, range of motion restrictions, and eventual contractures and deformities in
the skeletal system. All of these impairments can have a significant impact on
postural control and neuromuscular function in children with cerebral palsy
(26).
Clinical Assessment of the Infant 155

Spasticity is defined as hyperexcitability of the stretch reflex resulting in

a velocity-dependent increase in muscle tone (27). Clinically, the term muscle
tone is used to describe this resistance to passive movement associated with cere-
bral palsy. However, this is more correctly a combination of two impairments:
spasticity and hypoextensibility (25).
Secondary to the brain lesion, there are also mechanical changes in the
muscles of children with cerebral palsy. The muscles produce more force for a
given change in length, and therefore feel stiff and resist passive lengthening.
This is referred to as muscle hypoextensibility or stiffness (28).
Hypoextensibility makes it difficult for the infant to actively move through
complete ranges of motion and interferes with postural control and function. In
fact, the muscles of infants with cerebral palsy resist passive lengthening at
shorter ranges than those of nondisabled children (28). Over time, this may com-
promise normal skeletal alignment, which may lead to muscle contractures and
bony deformities.
Inability to produce sufficient muscle force is another muscular system im-
pairment seen in children with cerebral palsy. It has been shown that maximal
muscle force is lower in children with cerebral palsy and occurs earlier in the
range, secondary to the hypoextensibility of the muscle (25). Another limiting
factor that impacts on the capacity to produce power is the impaired facility to
recruit an adequate number of motor units from the motor neuron pool (29).
Insufficient force production results in decreased ability to produce power
during active contraction, for example, vertical jumping or push-off during gait.
Reduced power is also associated with the inability to sustain adequate force
production for a specific functional task. This is also known as muscle endurance.
The muscular system impairments described above can have a detrimental
impact on the skeletal system. Therefore, it is important to obtain good baseline
measurements of joint range of motion and to adequately assess how restrictions
in normal muscle length may contribute to abnormal alignment in age-appropriate
positions. Muscle shortening may be observed even in very young infants, and,
if addressed early, may decrease the atypical impact on alignment and func-
tion.
Manual muscle testing may be used to obtain a baseline measurement of
strength. There is, however, some doubt that muscle testing provides reliable
results in children with neurological disorders. However, Damiano and colleagues
(30) have had success using hand-held dynamometers to test muscle strength in
children with cerebral palsy. They have been able to correlate the increase in
strength with changes in gait parameters.
It is extremely important for the therapist to evaluate the musculoskeletal
system to assess muscle tone and stiffness, and to document baseline strength
and range-of-motion measurements. This information is useful in determining
how restrictions and impairments in this system impact upon the infant’s function.
156 Girolami et al.

Some questions to ask when assessing the musculoskeletal system follow.

1. Is the muscle tone altered? Too high? Too Low?
2. Are the muscles stiff and difficult to move passively?
3. Does the infant have range of motion restrictions?
4. Does the infant have any obvious or suspected contractures? Deformi-
ties?
5. Can the infant actively move through the expected range of motion
when performing functional activities?
6. Does the infant have adequate muscle strength?
7. Does the infant have difficulty producing adequate force for functional
activities?
8. Does the infant have difficulty sustaining adequate muscle activity for
functional activities?
9. Is normal alignment compromised by range of motion, muscle tone,
or strength issues?

D. Neuromuscular
Components of the neuromuscular system include timing and sequencing of mus-
cle activity, agonist and antagonist muscle control, and grading of eccentric and
concentric muscle activity. Through these neuromuscular functions, we are able
to selectively control and regulate muscle activity, anticipate postural changes,
and learn to execute unique movements (25).
The ability to selectively control movement is characterized by the capacity
to sequence and time muscle activity. For example, electromyography has shown
that in individuals with an intact central nervous system, there are specific se-
quences and timing of muscle activity for repetitive functional tasks (e.g., stand-
ing balance and gait) (31). In children with cerebral palsy, impaired neuromuscu-
lar control results in poor timing and sequencing, often accompanied by
irradiation of muscle activity into antagonist muscle groups causing muscle coact-
ivation and limiting the excursion of free movement (29).
The ability to anticipate and prepare for movement is necessary for transi-
tions and to sustain balance (26). Nashner and colleagues (32) demonstrated that
children with cerebral palsy have difficulty sequencing appropriate strategies for
muscle activation during standing balance activities. The strategies selected were
inefficient and very different from those used by nondisabled children. Their
efficiency was also compromised by coactivation of antagonists, limiting avail-
able movement to produce adequate balance reactions.
This impaired neuromuscular control also interferes with the ability to learn
new movement patterns and to adapt available movement patterns for novel tasks
and different environmental contexts (33). Consequently, children with cerebral
Clinical Assessment of the Infant 157

palsy seem to have movement patterns that are restricted in range, limited in
variety, and stereotypical (34,35).
These neuromuscular impairments contribute to the poor motor control and
subsequent postural issues seen in children with cerebral palsy. When assessing
movement in various positions, it is not enough to describe how the child moves,
but to hypothesize what neuromuscular impairments may be contributing to what
is observed. By doing this the therapist can begin to apply more specific and
innovative treatment strategies to reduce the impact of those impairments. As
more information is learned about motor control, there is the potential to devise
and implement more sophisticated technology, pharmacology, and handling strat-
egies to alter the impaired movement patterns associated with cerebral palsy.
Some questions to ask when assessing the neuromuscular system follow:
1. Does the infant demonstrate a variety of movement patterns?
2. Can the infant selectively control individual limb movements?
3. Can the infant selectively control individual muscle groups?
4. Is the infant able to move limb segments without overflow of muscle
activity into adjacent segments?
5. Does the infant have increased cocontraction during active move-
ments?
6. Can the infant efficiently grade movements producing smooth, con-
trolled eccentric and concentric muscle contractions?
7. Is the infant able to initiate, sustain, and terminate movement?
8. Can the infant control speed, timing, and sequencing according to task
demands?

E. Cardiopulmonary
Infants with cerebral palsy often have impaired cardiopulmonary function partic-
ularly as it relates to physiological control and endurance. It is important for
therapists in each discipline to be aware of potential impairments that may affect
the performance areas they are assessing.

1. Physiological Control
The infant’s physiological and autonomic responses to movement must be consid-
ered during the assessment process. Parameters such as heart rate, respiratory
rate, and oxygen saturation, as well as autonomic and visceral indicators of stress,
should be addressed (36).
Als (11) refers to these physiological changes as stress cues. If these stress
cues are present during interactive or motor behaviors (e.g., eating), it may be
an indication that the task is too difficult for the infant. Many of the common
indicators of stress are: sighing; yawning; sneezing; sweating; hiccuping; trem-
158 Girolami et al.

oring; startling; gasping; straining; coughing; spitting up; gagging/choking; color

change; respiratory pauses; and irregular respirations.

2. Endurance
When the infant fatigues easily or has poor intake and poor weight gain, this can
be caused by decreased endurance. This results in a circular effect and the poor
intake and failure to gain weight contribute to greater impairments in endurance.
Some of the diagnoses associated with poor endurance include prematurity, bron-
chopulmonary dysplasia (BPD), congenital heart disease, diaphragmatic hernia,
or structural abnormalities like tracheal stenosis or Pierre-Robin malformation.
The resultant clinical characteristic of impaired endurance is muscle weak-
ness and poor cardiovascular function, and yet, strengthening and aerobic condi-
tioning are rarely advocated in treatment of cerebral palsy (37–39). With regard
to aerobic capacity, correlation studies document a 30 to 50% difference in sub-
maximal heart rate between children with cerebral palsy and their nondisabled
peers (39–41). Descriptive information about cerebral palsy is rich with observa-
tions describing the slow and labored movements necessary to complete simple
tasks (42,43).
It is clear that impairments in the cardiopulmonary system can have a dev-
astating impact on the infant’s ability to interact with the environment and to
perform functional tasks. A fragile cardiopulmonary system can limit an infant’s
ability to perform; conversely, the system can become weak secondary to the
poor movement capabilities inherent in cerebral palsy.
Some questions to ask when assessing the cardiopulmonary system follow:
1. Does the infant exhibit any stress cues during interactions with the
examiner?
2. Does the infant exhibit any stress cues during handling or position
changes?
3. How frequently are the stress cues observed and what are the anteced-
ents?
4. Does the infant fatigue easily?
5. Can the infant sustain normal activity levels without cardiopulmonary
compromise?
6. Does the infant have sufficient motor function to develop adequate
endurance?

F. Gastrointestinal
Gastrointestinal (GI) problems are frequently seen in infants with cerebral palsy,
including motility disorders, gastroesophageal reflux (GER), peptic ulcer disease,
Clinical Assessment of the Infant 159

and constipation (44). These problems may appear as disorders of motor behav-
ior. For example, increased arching observed following feeding could be a result
of abdominal pain or reflex rather than overactivity of the back extensors. There-
fore, a careful history is essential to determine whether abnormal movement pat-
terns are influenced by impairments in the GI system.
This importance of assessing issues related to this system is often over-
looked. However, GI impairments can have a significant effect on posture, move-
ment, and infant behavior. Some questions to ask when assessing the gastrointes-
tinal system follow:

1. Does the infant show abnormal extensor tone following feedings?

2. Does the infant frequently refuse feeding or take small amounts of food
during feedings?
3. Is the infant extremely irritable following feedings?
4. Does the infant have excessive vomiting following meals?
5. Does the infant have excessive GI discomfort (e.g., gas or burping)
during or following feedings?
6. Does the infant demonstrate gastric distention?
7. Does the infant dislike prone positioning?
8. Is the infant frequently constipated?

G. Postural Control and Balance

There are a variety of different system models that hypothesize how impairments
in the various systems impact on postural control, an identified task, or a selected
goal. Each of these system theories implies that the emphasis shifts among the
contributing systems to produce the desired posture, task, or goal (45). This sec-
tion emphasizes postural control as the primary outcome of a systems model.
Postural control is the ability to adjust the body’s position in space for
the purposes of orientation, stability, anticipatory control, and alignment (46).
Contributions from all systems play a role in maintaining postural control. If any
system is impaired, postural control may be compromised, and alternative, less
efficient strategies will be developed.
Postural orientation is important in maintaining the appropriate relationship
between body segments in a specific environment for a specific task. Input from
the sensory system provides valuable information about the body in space
and the environment. The neuromuscular and musculoskeletal systems synchro-
nize the timing, force, and movements needed to successfully complete the task.
Postural stability or balance requires the infant to maintain the center of
mass (COM) over the base of support (BOS). If balance cannot be maintained,
160 Girolami et al.

and the COM is displaced outside the BOS, a variety of protective reactions can
be used to prevent a fall. To maintain balance, the infant relies on vestibular,
visual, tactile, and proprioceptive information, and the neuromuscular system
must be intact to appropriately coordinate the selection of the most efficient mus-
cles, as well as the timing and sequencing of the muscle activity. An intact muscu-
loskeletal system insures adequate range of motion, muscle strength, and muscle
tone to carry out the task in variety of environments.
Alignment contributes to both postural orientation and stability. It assists
the infant in maintaining the most optimal posture with respect to gravity and
the base of support. This permits the infant to use the input from various systems
to maintain or alter posture dependent on the task and the environment. Children
with cerebral palsy often have inefficient postural alignment (35). This can be a
result of system impairments that interfere with reception or processing of infor-
mation or ability to activate and sustain muscle activity and selectively control
movement. Abnormal alignment may lead to joint limitations and eventual de-
formities that will permanently compromise the infant’s function.
Anticipatory postural control is the ability to modify the sensory and motor
systems in response to changing task and environmental demands (46). Studies
have shown that normal individuals preset their posture in anticipation of the
task and not as a feedback response (47). Anticipatory control is dependent on
previous experiences and learning. Children with cerebral palsy, who have im-
pairments in the sensory and motor systems, may lack the opportunity to explore
and learn from their experiences, and therefore initiate inefficient strategies for
anticipatory control.
Postural control is required for every task we perform and is dependent on
the interaction of the infant with the task and the environment (46). Research
has shown that, in normal children, there are very definite sequences of muscle
recruitment that are task and environment dependent (48). In children with cere-
bral palsy, alternative muscle sequences and timing are utilized, which are less
efficient and interfere with postural control (49).
The therapist must observe the infant performing a variety of tasks within
different environmental contexts to determine the integrity of the infant’s postural
control. It is also essential for the therapist to observe the infant performing age-
appropriate tasks and moving about the environment. This insures a greater depth
of understanding regarding how the infant uses and adapts his postural system
for stability and balance.
Postural control is possible because of complex interactions among the all
of the individual systems. Without postural control, the infant cannot efficiently
and successfully function. Assessing the infant’s ability to maintain and regain
postural control forms the foundation of the discipline-specific performance
areas.
Clinical Assessment of the Infant 161

V. ASSESSMENT OF THE DISCIPLINE-SPECIFIC

PERFORMANCE AREAS

In the last section, information about each of the systems was presented, detailing
how impairments may contribute to the abnormal postural control and functional
limitations associated with cerebral palsy. In the following section, the assess-
ment considerations related to the discipline-specific performance areas will be
presented. The information in each discipline performance area details how im-
pairments in each system should be assessed to determine the impact on the
function of the infant.
As stated earlier in the chapter, standardized testing will not be specifically
addressed. The purpose of this chapter is to provide a framework for assessment
that will enable the therapist to develop treatment plans and intervention strate-
gies aimed at optimizing the motor performance of infant’s with cerebral palsy.
However, there are many excellent test tools available that enable the therapist
to evaluate gross, fine, and oral motor skills, as well as receptive and expressive
language levels (3–6). In addition, there is an excellent overview of infant assess-
ment tools in the third chapter of Pediatric Occupational Therapy and Early Inter-
vention (50).

A. Physical Therapy Assessment

Considering each of the systems discussed previously, the physical therapist as-
sesses the infant in the following performance areas: gross motor functions; Gait;
activities of daily living; and equipment. A list of questions that may assist you
in assessing each of these performance areas can be found in Table 2.

1. Gross Motor Functions

The physical therapist looks at age-appropriate gross motor functions to deter-
mine how the infant performs within varying environmental contexts. For each
of the gross motor functions, the physical therapist must observe the infant’s
postural control and the ability to transition from one position to another. In
addition, the influence of range of motion, skeletal alignment, reflexes, postural
reactions, and cardiopulmonary function must also be considered.
To do this efficiently, the therapist should have an organized approach.
Köng (51) recommends looking at the infant in eight positions: prone; supine;
sidelying; pull to sit; sitting; horizontal suspension; vertical suspension; and
standing.
Based on her experience evaluating and diagnosing infants with cerebral
palsy, Köng has found these positions provide a comprehensive view of the in-
162 Girolami et al.

Table 2 Physical Therapy Assessment of the Infant

1. Gross Motor Functions

a. Posture and Transitions
Assess patterns of movement in functional positions with and without assisted
postural support.
For each age-appropriate position, observe and evaluate the following:
• What are the parental concerns?
• How would you characterize the infant’s muscle tone at rest?
• Do movements, sensory stimuli, or emotional responses alter muscle tone?
• Does the infant tolerate handling and interaction with a stranger?
• Does the infant tolerate being placed in various positions?
• Is the base of support appropriate for the activity?
• Can the infant achieve good postural alignment for the activity?
• Does the infant have adequate postural control to initiate weight shifting in all
planes?
• Can the infant initiate a variety of spontaneous and selective movements?
• Does the infant have strategies to sequence movement?
• Is the infant able to appropriately time muscle activity?
• Can the infant generate adequate speed and force necessary for the activity?
• Can the infant grade agonist and antagonist control of muscle activity?
• Can the infant transition into and out of positions?
• Does the infant have adequate strength and endurance to initiate and sustain
gross motor activity?
• Can the infant perform fine motor or feeding tasks in these positions?
• Can the infant process sensory stimuli for postural control and movement?
• Does the infant have strategies for problem solving?
• Does the infant demonstrate intact body awareness?
• Are there regulatory issues that interfere with gross motor function?
• How does posture and movement affect respiration and endurance?
• Does the infant have any GI issues that may interfere with gross motor
function and transitions?
b. Range of Motion and Structural Alignment
• Are there joint range limitations?
• How do ROM limitations interfere with postural responses or gross motor
function?
• Are there skeletal abnormalities?
• Do bony alignment abnormalities interfere with postural responses or
function?
c. Reflexes
• Are reflexes obligatory for movement or function?
• Do reflexes interfere with function?
• Do reflexes cause asymmetries that interfere or compromise movement?
Clinical Assessment of the Infant 163

Table 2 Continued

d. Postural Reactions
• Are head and trunk right reactions observed in transitions to and from supine,
prone, and sidelying?
• Does the infant demonstrate age-appropriate protective responses: forward,
sideways, and backward?
• Are vertical and horizontal suspension responses adequate for the infant’s
age?
• Does the infant use equilibrium reactions to maintain balance and postural
alignment?
e. Cardiopulmonary Status
• Does the infant have a normal resting heart rate?
• Is the recovery heart rate within normal limits?
• Is the infant’s endurance adequate to sustain an activity for an extended
period of time?
• Are there changes in respiration secondary to movement or effort?
2. Gait
• Assess the infant’s ability to ambulate with and without support
• Assess arm swing, stride length, and phases of gait
• Assess distance and speed
• Assess gait on different surfaces and ability to stop and change directions.
3. Activities of Daily Living
• Inquire about the infant’s sleep patterns and daily routine?
• Inquire about feeding.
• What calming and coping strategies do the parents use?
• What calming and coping strategies does the infant use?
• Is the infant able to participate in activities of daily living: dressing,
undressing, bathing, and diapering? (This may be obtained per parent report)
• Do impairments in any system interfere with performance or participation in
ADLs?
• Assess positions used by the parents for carrying and sleeping.
4. Equipment
• Assess equipment used for positioning the infant.
• Assess day or night splinting used to maintain the infant’s range of motion or
alignment.

fant, allowing the examiner to correlate normal, atypical, and abnormal postural
control among the positions. The importance is not in the position itself, but in
knowing what the infant should be able to demonstrate in each position at any
given age.
For the therapist, these same positions can be used to assess gross motor
functions. However, this requires an intimate knowledge of normal motor devel-
164 Girolami et al.

opment to determine whether the infant is able to perform the functions using
age-appropriate components. Books on normal development are an excellent
source of information, as well as videotapes and observation of normal infants
(52–54).
(a) Postural Control and Transitions. The physical therapist assesses
the infant’s postural control, movement patterns, and ability to transition during
the performance of age-appropriate gross motor functions. The therapist may
place the child in a variety of positions or observe how the infant attains these
positions independently. As part of this observation, the infant’s muscle tone
should be assessed and changes in tone related to movement, sensory stimuli, or
emotional reactions should be noted.
The infant’s alignment and weight bearing should be observed in each of
the gross motor functions and during transitions and functional tasks. Weight-
shifting capabilities in static postures, transitions, and during functional tasks are
also assessed to determine whether the infant is able to move in all planes: frontal,
sagittal, and transverse.
Selective motor control, the variety of available movements, and the in-
fant’s functional ability to perform functional tasks in each position are also ob-
served. Neuromuscular control relative to timing, sequencing, and agonist/antag-
onist muscle activity should be assessed during spontaneous play and structured
tasks. The infant’s ability to generate adequate force production and sustain mus-
cle activity should also be judged.
Transitions should also be observed, as the infant moves into and out of
each position. Infant’s with cerebral palsy may appear quite functional in one
position, but be unable to independently move into other positions. It is important
for the therapist to know what positions and transitions emerge at each age, and
the postural and movement precursors required to support them.
The infant’s response to sensory stimuli and its effect on gross motor func-
tion is another important observational area. This will provide insights concerning
the infant’s ability to process and use sensory input to plan, organize, and se-
quence movements for function. The therapist can use this information to hy-
pothesize how sensory system impairments affect postural control and transi-
tions.
(b) Range of Motion and Skeletal Alignment. Limitations in the muscu-
loskeletal system can strongly impact movement and gross motor function. It is
not uncommon for very young infants to have joint range limitations secondary
to positioning or poor selective movement capabilities. When passive movement
reveals joint restrictions, the physical therapist should assess and document joint
range of motion, using a goniometer. This information should be reassessed fre-
quently to insure that the interventions or positioning developed to prevent mus-
cle shortening is effective.
Clinical Assessment of the Infant 165

Actual or potential skeletal abnormalities should also be assessed and

noted. Insufficient muscle activity, asymmetries, or muscle weakness can all be
contributing factors. The therapist has the potential to minimize the secondary
effects of cerebral palsy when the infant is referred early. However, this requires
critical observational skills, clinical reasoning, and creative intervention strate-
gies.
(c) Reflexes. Reflexes are assessed to determine their impact on posture
and movement. Generating a list of reflexes serves no purpose unless the therapist
can determine whether the reflex activity interferes with function, causes asym-
metries, or is simply appropriate for the infant’s age. If the therapist observes
redundant patterns that limit the variety of selective movement or interfere with
function, this may be the influence of reflexes, but can also be related to sensory
or neuromuscular impairments.
Knowledge of reflexes is important to the therapist if the information can
be used to develop intervention strategies, which minimize or eliminate the nega-
tive effect of the reflex on movement or function. The goal is to provide the
infant with the possibility to organize and perfect alternative movements that will
produce more functional results.
(d) Postural Reactions. Testing and assessing the availability of
righting, equilibrium, and protective reactions provides information regarding the
infant’s ability to align and orient the body in space, maintain the center of mass
over the base of support, and prevent a fall when the center of mass moves outside
the base of support. How the infant responds to the various stimuli used to elicit
these responses can assist the therapist in identifying impairments in the sensory,
neuromuscular, or musculoskeletal systems. This information may provide an
insight into why an infant is having difficulty organizing and responding to intrin-
sic and extrinsic stimuli.
(e) Cardiopulmonary Status. Finally, the therapist should determine
how gross motor function, transitions, and functional activities impact the infant’s
heart rate, endurance, and respiration. Decreased activity or prolonged hospital-
ization can have a detrimental effect on the cardiopulmonary system that may
interfere with the infant’s ability to initiate or sustain age-appropriate postures
and functions. Conversely, compromised motor activity related to impairments
in the musculoskeletal and neuromuscular systems can adversely affect status
of the cardiopulmonary system. In either case, intervention strategies must be
implemented to enhance the capacity of this system.

2. Gait
If the infant is walking, it is crucial for the therapist to assess gait. When looking
at gait, the therapist assesses the same areas described in the section on postural
166 Girolami et al.

control and transitions. Additionally, the therapist should assess gait parameters
including arm swing, stride length, heelstrike, toe-off, and stance. There are many
excellent resources available to assist the therapist in learning the normal gait
parameters for infants and children (55,56).

3. Activities of Daily Living

This may technically be considered the domain of the occupational therapist, but
it is also important for the physical therapist to determine how the infant partici-
pates or independently performs daily living skills. This will provide more in-
depth insights concerning how impairments interfere with function. In addition,
the information can be used to develop goals and intervention strategies that are
directly associated with improved performance of relevant functional skills.
The therapist should also inquire and observe how the infant is carried,
dressed and handled by the family or caregiver. This knowledge will be helpful
in working with the family to alter handling and positioning that may minimize
neuromuscular, sensory, or musculoskeletal system impairments.

4. Equipment
The therapist should inquire about and, if possible, look at equipment used to
position the infant to enhance function or to maintain optimal musculoskeletal
alignment. Positioning is an important aspect of treatment intervention. Potential
musculoskeletal contractures and deformities, as well as neuromuscular, sensory,
and regulatory impairments can often be addressed through consistent positioning
or changes in the environment.

B. Occupational Therapy Assessment

The occupational therapist assesses the performance areas of: reach and support-
ing abilities in the upper extremities; hand function; play behaviors; and activities
of daily living.
It is important for the therapist to have a comprehensive understanding of
the developmental expectations in each performance area and how they interre-
late. Assessment of the performance areas is based on impairments in each of
the systems to determine how they interfere with upper extremity and fine motor
function. A list of questions that may assist you in assessing each of these perfor-
mance areas can be found in Table 3.

1. Reach and Upper Extremity Support

The occupational therapist looks at the infant’s reach and supporting abilities in
spontaneous play as well as during structured tasks. Postural control and sensory
Clinical Assessment of the Infant 167

Table 3 Occupational Therapy Assessment of the Infant

1. Reach and Supporting Abilities in the Upper Extremities

• Are there parental concerns in this area?
• In each position assessed, postural control adequate to support upper extremity
functioning?
• Are there joint range limitations in the upper extremity?
• What reach patterns are used in each position? (If necessary to elicit reach,
assistance in postural support is given in order to observe reach patterns
available.)
• Does the infant reach in a variety of planes (frontal, sagittal, transverse)?
• Does infant use unilateral and bilateral approach as task demands?
• Is the infant able to combine upper and lower arm movement patterns for
functional reach, near and away from the body?
• Are there preferences or asymmetries between right and left upper extremities?
• Is there strength and endurance to initiate and sustain reach?
• Is the infant’s reach possible without the influence of grasp?
• Can the infant support on upper extremities?
• What is the quality of movement patterns throughout the upper extremity and
body upper extremity supporting?
• Is the infant able to weight bear and reach in a variety of planes as appropriate
for age expectations?
• What is the quality in movement patterns during upper extremity supporting?
• Can the infant initiate placement, maintain the appropriate weight shift, and
reach?
• Is the infant able to adequately grade and control perceptual-motor aspects such
as timing, speed, and the ability to orient to an object?
• Is reach spontaneous upon presentation of stimuli?
• Are there any sensory impairments (decreased awareness, poor registration, over
reactivity to sensory input) contributing to upper extremity limitations?
• Are play and interactional interests appropriate to support/motivate upper
extremity function?
• Does the infant appear to understand that the upper extremities, especially the
hands, can affect the environment?
2. Fine Motor Function
• Are there parental concerns in this area?
• Is the infant’s postural control and proximal upper extremity function adequate to
support fine motor performance in all positions expected for their age?
• Are regulatory abilities and sensory processing adequate to support fine motor
development and opportunities?
• What is the general appearance of the infant’s hands?
• Are there any joint range limitations in the infant’s hands?
• Are grasp, traction, and orienting reflexes appropriately integrated in the infant’s
hands?
• Does the infant initiate a variety of grasps appropriate for their age?
• Can the infant sustain a variety of grasps?
Table 3 Continued

• Are the thumbs active in various grasps and during spontaneous hand
movements?
• What movement patterns are used during the different grasps?
• Can the infant release an object?
• What movement patterns are used in releasing an object?
• Does external support allow for higher level hand functioning?
• Is hand development symmetrical?
• Does the infant have a hand preference?
• Does the infant exhibit premanipulative skills such as: spontaneous movements in
fingers and thumb, dissociated movements between fingers, dissociation of radial
and ulnar sides of hands, and isolated finger use?
• Does the infant engage in bimanual fine motor ability as expected for his age?
• Is the infant’s attention adequate for the fine motor task?
• Is the infant able to adequately grade and control perceptual-motor aspects such
as timing, speed, and the ability to orient to an object?
• Does the infant exhibit adequate oculomotor control to support hand function?
• Does the infant display adequate eye–hand coordination?
• Can the infant combine hand function with reach?
3. Play
• Is the infant motivated or interested in age-appropriate play?
• Does the infant have adequate postural control to support expected play
behaviors?
• Does the infant have a variety of positions available to allow for independence
and age-appropriate play experiences?
• Are the infant’s gross and fine motor abilities able to support expected play
behaviors?
• Are regulatory and sensory-processing abilities adequate to support play
development?
• Does the infant exhibit playfulness with objects and people?
• Is the infant able to be entertained using a variety of objects?
• Is the infant able to be entertained using social interaction with a variety of
people?
• What play schemes does the infant display with objects and people and are they
age appropriate?
• Is the infant independent in playing with regard to attention, intention, and
problem solving?
• How long is the infant able to entertain himself?
4. ADL
• Do parents have any concerns in this area?
• Does the infant tolerate or enjoy: feeding, dressing, bathing, diapering, and being
carried?
• Does the infant participate appropriately in: feeding, dressing, bathing, diapering,
and being carried?
• Are regulatory, sensory-processing, cardiopulmonary, gastrointestinal or postural
control issues interfering with ADL performance?
• Assess positions and routines used for: feeding, dressing, bathing, diapering,
carrying, and sleeping.
Clinical Assessment of the Infant 169

processing provide the foundation for upper extremity function and hand skill
development. In early development, the upper extremities are used to assist with
postural stability and control (53,57). As the infant develops greater head and
trunk control, arm function increases. The freedom to move the arms away from
the head and trunk, as well as the quality of how this is done during both reaching
and supporting activities, gradually improves with age.
In addition, the upper extremity is used to support partial body weight dur-
ing transitional movements. Weight bearing, weight shifting, and reaching in the
upper extremities also assist in the development of postural control as well as
the development of scapula-humeral control necessary for reaching in space (53,
57).
Therefore, it is important to assess postural control as it relates to upper
extremity skills in all functional positions. It is important to determine what the
infant can do independently. When posture and balance are limited, providing
external control may increase reaching and supporting abilities.
In the infant under 4 months of age, little voluntary reaching or transitional
movements are present. However, prereaching behaviors should be assessed, and
may include: (1) random, involuntary movement of the arms away and toward
the body; (2) midline grasping of clothing, hand-to-hand play; (3) the ability to
bring arms forward to support in prone on elbows; (4) the ability to push down
against the surface with the upper extremities; and (5) the ability to initiate and
sustain weight bear while lifting and turning the head.
By the time the infant is 4 months, head and trunk control are sufficient
to allow initiation of voluntary swiping of objects. The occupational therapist
assesses the spontaneity of arm placement, quality and functional use of reach
and weight bearing in the upper extremity. This includes observation of move-
ment patterns and range of motion in the spine, scapula, humerus, and lower arm.
Reach is assessed for variety, symmetry, and planes of movement. These are
continually related to alignment, weight bearing, and weight shifting in the body
as a whole.
In addition to the motor components, other systems that may affect reach
in the infant with cerebral palsy need to be considered, such as sensory processing
and respiration. If oculomotor function, modulation of sensory stimuli, or body
awareness is insufficient, then the infant’s quality or ability to reach is also defi-
cient. Similarly, if respiration is compromised, the infant often uses shoulder
elevation to assist in breathing, thus limiting the arm’s availability for reach expe-
riences. Table 3 summarizes questions for assessing upper extremity functioning
from perspectives of all systems.
2. Hand Function
Two responsibilities of the hand are the sensorimotor exploration of objects and
the perceptual gathering of information. In its most obvious role, the hand pro-
170 Girolami et al.

vides infinite sensorimotor capabilities. The hand allows for simple motor pat-
terns using power, precision, and coordination, as well as very complex combina-
tions of in-hand manipulations and use of tools. The hand also affords a wealth
of perceptual information about size, shape, contour, weight, density, texture, and
temperature, all of which dramatically contribute to our environmental under-
standing and learning. There are many important contributing factors to the devel-
opment of hand function in the child such as postural control, proximal upper
extremity control, sensory functioning, cognition, and intention (58).
Proximal and distal upper extremity control develops almost simulta-
neously (59). However, hand skills are dependent on proximal control for both
stability and mobility to allow placement of the hand for interaction with the
environment, toys, and self (58). Forearm and wrist control are also important
to orient the hand in space. This allows the optimal hand position and stability
for prehension. Therefore, assessment of postural and proximal control, including
the forearm and wrist, are necessary in evaluating fine motor function.
Hand function typically includes the use of voluntary grasp, release, and
manipulation, which does not occur before 4 months. However, in the birth to
3-month-old infant, the occupational therapist observes pregrasp components that
are important to later hand function (52). These include: (1) general appearance
of the hands (relaxed, fisted, in-dwelling thumb); (2) emergence and integration
of grasp and traction reflexes; (3) orienting and opening responses to touch; (4)
spontaneous opening and closing of fingers and thumbs; (5) visual and tactile
awareness to hands observed through hand-to-hand contact, hand-to-mouth con-
tact, and opportunities for eyes to visualize the hands.
As the infant continues to gain early postural control in prone and supine
positions, freedom of the fingers from fisting, early scratching, hands more often
open with early reach and support are expected. By 5 to 6 months, grasp patterns
can then be assessed from a developmental perspective looking at motor, percep-
tual, sensory, and play aspects while presenting objects of different sizes and in
different orientations. These basic prehension patterns are interdependent upon
sensory processing, cognitive intent, and play development, laying the foundation
for manipulative functions of the infant’s hand.
The infant is observed for abilities to both sustain a placed grasp and to
initiate a variety of age-expected prehension patterns (57,60). The grasp of the
infant is observed in combination with reaching and in various positions. As
with reach, symmetry, strength, and selective motor control are assessed. Both
unilateral and bilateral tasks are observed.
Adequate sensory registration and processing are necessary for optimal
hand functioning (17,57,58). In particular, tactile, oculomotor development, and
attention should be specifically noted (61). Sensory and perceptual aspects of
grading, timing, orientation, and accommodation are also important to assess.
Clinical Assessment of the Infant 171

Table 3 summarizes questions for assessing fine motor functioning from perspec-
tive of all systems.

3. Play
Play is considered one of the primary roles of the child (62). It is the central
focal point for learning about and interacting in the world. There is much informa-
tion on perspectives, philosophies, scales, and play-based assessment tools in the
literature (62). In the infant with cerebral palsy, motor control, schemes, and
interactional behaviors are important components in assessing play.
Motor aspects include the postural control and the gross and fine motor
skills necessary to support play experiences and development. Play schemes and
behaviors assess what and how the infant explores and interacts with objects and
people, for example, mouthing, clapping, poking, etc. It is important that the
infant be able to play independently as well as engage in interactions with people.
Infants with cerebral palsy have sensory and motor limitations that often decrease
the opportunities for play development. Through play, the infant learns to prob-
lem solve and practices organizational and sequencing strategies. Table 3 summa-
rizes questions for assessing play in the infant with cerebral palsy.

4. Activities of Daily Living (ADLs)

Activities of daily living are primarily assessed from the care-taking perspective.
Interviewing the parents offers insights into areas of concern regarding dressing,
bathing, handling, sleeping, and position tolerance. By 4 to 5 months, the typical
infant is tolerating and even enjoying daily living tasks. In the 6- to 12-month
old infant, increased participation in daily routines is present. Activities of daily
living encompass sensory and motor experiences, self-regulatory functioning, and
play development. Table 3 summarizes questions for assessing ADLs in the infant
0 to 12 months.

D. Discipline-Specific Speech Therapy Assessment

An infant’s ability to get adequate nutrients required for normal growth and devel-
opment is dependent on both physiological and environmental processes. The
oral–motor ability to prepare a food bolus and swallow with coordination of the
respiratory pattern is essential for feeding and speaking. This section will provide
a comprehensive look at the interdisciplinary assessment of the infant for oral
motor/feeding, respiration, phonation, and communication. Keep in mind that
the speech therapist is looking at the discipline-specific performance areas with
reference to posture and movement and how impairments in the various systems
172 Girolami et al.

impact on function. A list of questions that may assist you in assessing each of
the performance areas can be found in Table 4.
Speech therapy assesses the performance areas of: oral motor/feeding func-
tion; respiratory function; phonatory function; and communication function (re-
ceptive and expressive).

1. Oral Motor/Feeding
The clinical history of the infant will often characterize the type of feeding/oral
motor problem that an infant manifests. The causes of feeding and respiratory
disorders in infants are numerous. The feeding history needs to be taken in the
context of each child’s general health, developmental status, and environment.
A complete history includes the type of feeding mode, diet, supplements, length
of time of feedings, and amount of food being ingested. How the infant reacts
to changes in movement, texture, temperature, and taste continue to influence the
sensory and regulatory functions of the infant.
Posture and movement control in the head and trunk are the foundation
for oral motor function and speech development. Dissociation of the head from
shoulders and trunk from legs can determine the level of fine oral motor control
the child may achieve. The ability to dissociate the jaw, tongue, and lips and
coordinate it with respiration are strongly associated with the oral motor function
the infant will develop in feeding. For example, if an infant does not have ade-
quate postural control to clear the airway, oral feeding would be inappropriate.
During the clinical oral motor examination, the therapist must have a thor-
ough understanding of the infant feeding mechanism. Determinations of the sym-
metry, structure, and patterns of oral motor function must be made. The speech
therapist must ascertain whether the oral motor patterns are developmentally,
transitionally, or abnormally present in the infant. Figure 5 is a feeding assess-
ment form.

2. Respiratory Control
With regard to the cardiopulmonary system, the speech therapist focuses on respi-
ration. Respiration is defined as the exchange of oxygen and carbon dioxide be-
tween the atmosphere and the cells of the body through the process of inhalation
(inspiration) and exhalation (expiration) (52). All of the systems impact on the
respiratory function of the infant. It is necessary to assess the structure, movement
patterns, and coordination of the respiratory mechanism. The therapist should
assess the infant in the most stable and functional position for respiratory control.

3. Phonatory Function
The ability to generate a voiced sound is a very complex area to assess. The
speech therapist evaluates the infant’s ability to vocalize and subsequently use
Clinical Assessment of the Infant 173

Table 4 Speech Therapy Assessment of the Infant

1. Oral Motor Function

a. History
• How is the infant fed? (NGT, GT, Oral(PO))
• What is the infant fed?
• Are there any supplemental feedings?
• How long does it take for one feeding?
• What is the quantity of liquids in a 24-h period?
• Are the infant’s nutrients being met?
• What is the frequency of feedings?
• How is the infant held for feeding?
• Is there any distress on liquids?
• Is there any distress on solids?
• Are they using any special feeding techniques?
• Are you using any special utensils/nipples for feeding?
• Is the infant being fed at the age-appropriate level? (bottle, cup, spoon, finger
food, etc.)
• Is the child able to control oral secretions?
• Has the child a history of respiratory disorders?
• Does the child have other signs of distress?
• Does the child have a past medical or surgical history?
• Does the child have gastrointestinal or motility problems (vomiting,
gastrointestinal reflux-GER, abdominal pain, constipation, failure to thrive)?
b. Clinical Examination
• Are there sensory or regulatory issues contributing to oral motor functions
(see Table 2)?
• Is there a presence or absence of the oral reflexes (rooting, sucking, etc.)?
• What is the infant’s reaction to touch in the oral area?
• How does the infant react to changes in texture, temperature, and taste of
food?
• How does the infant react to soft toys around the mouth?
• Is the infant’s postural control adequate to support respiratory function?
• How does the face look (symmetry, structure, tone, movement patterns)?
• How do the lips look (symmetry, structure, tone, movement patterns)?
• How does the mandible look (symmetry, occlusion, teeth, movement
patterns)?
• How does the tongue look (symmetry, structure, tone, movement patterns)?
• How does the maxilla and palate look (symmetry, structure, tone, movement
patterns)?
• What does the sucking pattern look like (strength, suction, compression,
coordination)?
• What does the swallowing pattern look like (pattern, noisy, gulping, rhythm,
etc.)?
• What does the chewing pattern look like (movement, type, dissociation)?
174 Girolami et al.

Table 4 Continued

• How does the infant coordinate the suck/swallow/breathe function? And what
impact does the infant’s position have on this function?
• Does the infant have the ability to bring their hand to mouth and react?
• Is jaw clonus, grimacing, and/or drooling present?
2. Respiratory Function
• Are there sensory or regulatory issues contributing to respiratory functions
(Table 2)?
• Is the infant’s postural control adequate to support respiratory function?
• What type of breathing pattern do you see (diaphragm vs. abdominal)?
• What is the general appearance of the rib cage (sternal retraction, bulge at
rectus, rib flaring)?
• Is their rib cage movement?
• Is their lower rib expansion?
• Is their belly expansion?
• What happens with respiration when there are changes in position?
3. Phonatory Function
• Are there sensory or regulatory issues contributing to phonatory function?
• Is the infant’s postural control adequate to support respiratory function?
• Is the infant’s speech intelligible?
• What is the rate of speech (timing)?
• What is the voice quality (breathy, shrill, hypernasal, gurgly, weak,
hyponasal)?
• Is there nasal emission during speech?
• What is the pitch (high, low, normal)?
• What is the volume (normal, weak, overloud)?
4. Communication Function (receptive and expressive)
• Are there sensory or regulatory issues contributing to phonatory function?
• Is the infant’s postural control adequate to support respiratory function?
• What level of expressive language is the infant exhibiting (cooing, babbling,
jargon, single words, etc.)?
• What is the infant’s level of play?
• What level of receptive skills does the infant demonstrate with people and
objects (auditory awareness, following directions, etc.)?
• What is the mean length of vocal response in different positions and with
active movement (verbal and nonverbal)?
Clinical Assessment of the Infant 175

Figure 5 Clinical feeding evaluation.

176 Girolami et al.

Figure 5 Continued.
Clinical Assessment of the Infant 177

Figure 5 Continued.

it functionally for communication. The therapist assesses the type, rate, and qual-
ity of the infant’s vocalization to determine whether it is normal, abnormal, or
delayed. There are multiple systems affecting the infant’s skills in this area (e.g.,
neuromuscular, language processing, sensory processing). The speech therapist
must keep these systems in mind to effectively evaluate and plan for treatment
in this area.
178 Girolami et al.

4. Communication Function
Communication involves generating an idea or a thought that needs to be trans-
mitted, initiating it, receiving a message, and understanding it. The infant with
cerebral palsy may have limited communication abilities secondary to motor,
vision, and/or hearing impairments. A complete speech, language and hearing
evaluation should be done with children exhibiting impairments in any of these
areas. The speech therapist’s job during the interdisciplinary assessment is to
determine the impact of the infant’s impairments on their communication skills.
In the infant, some of the areas to be considered are their level of play, receptive
and expressive, and language functioning. An excellent scale for measuring the
infant’s communication and interaction is The Rossetti Infant-Toddler Language
Scale (63).

VI. ANALYZING THE DISCIPLINE-SPECIFIC

ASSESSMENT DATA

During the interdisciplinary assessment, therapists gather discipline specific as-

sessment data. Together, they combine their clinical reasoning skills to analyze
the data and determine which impairments are hindering the infant’s functional
development. Sound clinical reasoning incorporates the knowledge, experience,
judgment, problem solving, and decision making of the practitioners (64). Work-
ing together improves the potential to accurately determine which systems are
causing those impairments.
In this analysis process, the therapists look first at how the infant is moving
and interacting. Each therapist will be observing different functional positions
or tasks. This requires critical observation skills and it may be helpful to ask
some of the following questions:
1. How atypical is the response?
2. How often is the atypical or abnormal response elicited and under what
circumstances or conditions?
3. What is going on in other areas of development that may be influencing
this behavior?
4. How does the atypical or abnormal movement affect function?
5. Can the responses be managed with specific structuring, environment
alterations, or handling by parent, therapist, or caregiver?
Next, and most importantly, the therapists determine what impairments
may be causing the abnormal movement patterns and behaviors observed. This
is the process of analyzing why the impairments may be occurring and which
systems are involved. This is a critical process and care must be taken to carefully
Clinical Assessment of the Infant 179

analyze the possible contributions from each of the systems previously discussed.
Working together, the members of the assessment team can share their discipline-
specific knowledge and clinical reasoning and experience to insure that each of
the systems is thoroughly investigated and the most significant impairments are
exposed.
Table 5 is one example of how this information can be organized to assist
the therapist in analyzing the assessment data for the eventual development of
goals and treatment strategies. In the top half of the table, space is provided to
input demographic and diagnostic information. There is an area to note the
strengths of the infant and the family. These can often be utilized to enhance
treatment strategies and outcomes.
The middle section of the table has three columns. In the left column, Ob-
servation of Performance Areas, space is provided to list descriptions of how the
infant moves. For example, if a 7-month-old infant is placed in a sitting position,
the therapist may observe excessive spinal extension, causing the infant to arch
backward. While this is a very obvious observation, there may be a number of
impairments that cause this motor behavior.
In the next column, Impairments, the therapist must ask why the infant may
be moving or behaving in a particular way. This may be the most difficult part
of the assessment process, requiring the therapist to generate hypotheses regard-
ing all of the possible organ systems that may be contributing to the impairments
observed. Table 1 provides a list of the common organ systems to consider. Re-
lated to the example above, these may be some of the possible impairments that
cause the infant to arch backward.
1. Increased muscle tone in the head, trunk, and extremities—a neuro-
muscular system impairment.
2. Inadequate balance of trunk extensors and abdominal—a neuromuscu-
lar system impairment.
3. Decreased ability to maintain a sufficient airway without adequate
balance of neck extensors and flexor muscles—a respiratory system
impairment.
4. Decreased ability to process multisensory input and extends as part of
a stress response—a sensory or regulatory system impairment.
5. Feeding or reflux problems that are relieved by extending the neck and
back—a respiratory or gastrointestinal system impairment.
Any or all of these impairments may contribute to why the infant is arching
backward. The clinical experience of the therapist plays a crucial role in his or
her ability to select the correct impairments, prioritize them, and develop specific
intervention strategies to address each one.
Finally, based on the observations and hypothesized impairments, the thera-
pist makes a list of what age-appropriate functions have not yet emerged. This
 180
Table 5 Assessment Worksheet

Strengths (Included in
this list are any
motor, cognitive, Organ Systems to access impairments
CHILD: DATE:
communication, of body structure and function.
BIRTHDATE: CHRONOLOGICAL AGE: behavioral, attitudinal
and/or family-related Musculoskeletal Posture & Balance
strength which will Sensory Neuromuscular
DIAGNOSIS: ADJUSTED AGE:
assist the child Gastrointestinal Regulatory
achieve his or her Cardiopulmonary Processing
functional goals.)

Observations Impairments Functional Limitations/Activity

Description of motor movement Loss or abnormality of body structures or physio- Restriction of ability to perform functional
and patterns. logical body function. (Organ Systems) activities. Secondary to impairments in body
(How they do it?) (Why are they doing it?) structure or function.
(What they can’t do?)
Relate the impairments to discipline-specific
functional limitations. This will assist you in
keeping treatment directed toward function.

Girolami et al.
Disability/Participation: (Restricted participation in typical societal roles.)

Societal Limitations/Contextual Factors: (Barriers to full participation imposed by societal attitudes, architectural barriers, social poli-
cies, and other external factors.)
Clinical Assessment of the Infant 181

information is placed in the final column, Functional/Activity Limitations. In the

example of the 7-month-old infant, the backward arching may interfere with a
variety of functional activities including sitting independently, using both hands
to play with a toy, or babbling. Working as a team, the therapists and the family
can better analyze the most significant contributing factors influencing the behav-
iors observed. Their collaboration enhances the identification of the impairments
that contribute to the functional/activity limitations and allows the team to hy-
pothesize potential disabilities and societal limitations.

VII. CHAPTER SUMMARY

In this chapter, one model for a multidisciplinary assessment of the infant with
suspected cerebral palsy has been presented. This model is based on the assump-
tion that all of the physiological systems contribute to motor control. By ap-
proaching the assessment as an interdisciplinary team, the expertise of each team
member can be utilized to identify the system impairments that interfere with
function. The team then writes up the assessment and develops the treatment
plan, and functional goals and intervention strategies can be determined. This
will be discussed in Chapter 7 and the entire process will be presented in a case
study in Chapter 9.

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7
The Written Assessment,
Treatment Planning, and
Intervention Strategies

Gay L. Girolami
Pathways Center, Glenview, Illinois
Judy M. Gardner and Diane Fritts Ryan
DuPage Easter Seals, Villa Park, Illinois

I. INTRODUCTION

In the previous chapter we presented a model for collecting assessment data and
organizing and categorizing the observations gleaned during that assessment pro-
cess. In this chapter, we will discuss how the information collected and organized
in Chapter 6 can be used to create a written document, write functional goals,
develop a treatment plan, and create intervention strategies.

II. WRITING THE MULTIDISCIPLINARY ASSESSMENT

After organizing the data collected during the assessment, the therapist must pro-
duce a written document to describe and interpret the observations, discuss the
correlation between impairments and functional limitations, formulate conclu-
sions, and provide recommendations for intervention. We endorse a format that
is simple, concise, and positively written. Whenever possible, the information
should be compiled as a single, interdisciplinary document. This provides a more
holistic overview of the infant’s performance and sets the tone for a team treat-

185
186 Girolami et al.

ment approach. The assessment document should be sent to the family, referring
physician, and other professionals identified by the family.
If you are working independently, the same format for documentation can
be followed, but, of course, it will be written up from a single point of view. We
are aware that in some situations only one discipline is available for assessment or
the referring physician may request an assessment in only one therapy discipline.
In this section, we will discuss and describe the information to be docu-
mented in the written interdisciplinary assessment. In many centers the format
for the assessment is preordained by the facility. However, if you have an oppor-
tunity to provide input regarding the organization and content of the document,
we recommend the following content areas (Fig. 1):
Background data (history, reason for referral, parental information, and
concerns or information obtained from other professional reports)
Assessment data ( functional abilities and strengths, organ system impair-
ments, functional limitations, and compensations)
Analysis and summary of strengths, impairments, and limitations
Recommendations (type of treatment, frequency of treatment, and outside
referrals)
Functional goals. (Chap. 6, Fig. 3)

A. Background Data
Generally the team, or one member of the team, who assumes responsibility for
this portion of the written assessment, creates the section on background informa-
tion. This is often called the history. The history should contain information re-
garding parental concerns, physical abilities, daily routine, ongoing medical care,
and other therapies or interventions that the child may be receiving. Subjective
information from other professional reports should be relative to therapy. It can
include information from follow-up clinics or other professional assessments such
as orthopedics, neurology, or gastroenterology, but only as it relates to physical,
occupational, or speech therapy issues. Information available from other medical
records, that is not pertinent to the treatment you will provide, need not be in-
cluded. As a rule of thumb, if it does not impact on your treatment or provide
information about the functional level of the infant, it most probably can be elimi-
nated from your report.

B. Assessment Data
In the observation section of the written assessment, the therapists each record
and analyze the clinical observations and objective data specific to their disci-
pline. This includes the infant’s functional abilities, regulatory abilities, posture
Assessment, Treatment, and Intervention 187

Figure 1 Multidisciplinary assessment.

and movement patterns, and impairments in the various systems, particularly the
regulatory, neuromuscular, sensory, musculoskeletal, gastrointestinal, and cardio-
pulmonary systems. Results from standardized testing, joint measurements, and
other quantitative data should also be recorded and interpreted. Significant or
predictable disabilities and current or potential societal limitations should be
noted.
188 Girolami et al.

C. Data Analysis
In the summary section of the assessment, the interrelationship of these data must
be analyzed as it enhances or interferes with the infant’s functional abilities. In the
process, the infant’s strengths and the most critical impairments and functional
limitations should be identified. It is essential to write up the information in a
way that emphasizes the child’s abilities. Assessments often overlook the client’s
strengths, focusing only on the impairments and functional limitations. We be-
lieve that it is important to acknowledge the strengths and build on these when
selecting intervention strategies. In addition, this approach may assist the family
to see their child in a positive light, even in the face of obvious limitations. In
this way, we begin our initial interactions with the family by working from a
point of strengths rather than weaknesses.
There are many options for discussing the impact of the various system
impairments and how they interfere with the acquisition of functional skills. We
do not advocate recounting a litany of the abnormal postures and movement pat-
terns used by the infant. The object is not to present a picture of how the child
moves, but rather why he moves as he does. To do this, we must identify and/
or hypothesize which system impairments are present and how they interfere with
function. Through this process, we begin to build the framework for the treatment
plan and identification of goals and treatment strategies that will minimize the
identified system impairments.

D. Summary
After presenting your analysis of the objective information, and your hypotheses
regarding how the impairments interfere with function, you must summarize the
most significant impairments and functional limitations in a precise, clearly writ-
ten paragraph. This will allow anyone to pick up your report and, from the sum-
mary, gain a clear picture of the main, discipline-specific issues.

E. Recommendations
Recommendations regarding the need for intervention, referral for additional test-
ing, or other professional consultation should be presented next. When devel-
oping recommendations, therapists should consider the family situation, financial
resources, and time constraints. Recommendations should be developed as a team
and presented to the family as options. Alternative recommendations should be
offered, which will allow the family to select the program that works best for
their individual situation (1).
Assessment, Treatment, and Intervention 189

F. Functional Goals
The family and all involved therapy disciplines should write the functional goals.
Functional goals are based on the identified functional limitations. There is a
logical progression between what is interfering with function and what must be
accomplished to insure improved functional performance. The treatment goals
should identify the expected functional outcomes and provide the foundation for
treatment planning and selection of intervention strategies (2).
Goals allow the therapist to verify the efficacy of the selected intervention
strategies by documenting measurable changes in functional performance. These
objective, measurable changes can then be used to illustrate the effectiveness of
intervention and assist the family and clinician in obtaining payment for treat-
ment.
If functional changes cannot be documented, the therapist must reassess
the identified impairments, and determine how to revise or modify the goals,
treatment plan, and intervention strategies to achieve the desired outcomes. Well-
written, measurable goals can prevent the loss of valuable treatment time by
assisting the clinician in pinpointing the desired functional outcomes and in plan-
ning appropriate intervention protocols that impact on impairments that interfere
with function.
Writing functional goals also provides an opportunity for objective commu-
nication between the family and the therapists. It is important to schedule regular
meetings with the family to discuss the expectations that they have for their child.
This discussion may reveal expectations that are developmentally on target, or
expectations that are too advanced for the infant’s developmental age. The thera-
pist may need to educate the family and to assist them in accepting and writing
more developmentally appropriate goals. This process can be delicate.
The clinician has the significant responsibility of educating the family with-
out shattering their dreams for their child. For example, the family may express
a desire for their infant to sit independently and play with toys, but developmen-
tally the child cannot yet push up onto extended arms and reach for objects.
The therapist can use this opportunity to provide the family with suggestions for
positioning that allows the infant to spend some time in a well-aligned sitting
position. This can also be used as an opportunity for the therapist to educate the
family about precursor activities for learning to sit and play independently. The
therapist can explain some of the neuromuscular, musculoskeletal, and sensory
benefits of pushing up in prone or playing in supine, and how experiences in
these positions form the foundation for sitting and playing. In this manner, the
therapist can assist the family in selecting more developmentally appropriate
goals without diminishing the importance of the family’s aspirations for their
child.
190 Girolami et al.

In an interdisciplinary clinical setting, we advocate that goals be written

as a team. Recall that, at a minimum, the team includes the family and members
from all the evaluating disciplines. Goals written in this manner insure that each
member of the team is aware of the other’s concerns and has a good understanding
of where and how each member of the team is directing their treatment interven-
tion. This team approach insures better continuity of treatment, as each team
member can try to incorporate aspects of other disciplines’ goals into the interven-
tions.

III. WRITING FUNCTIONAL GOAL

A good functional goal should contain the following: subject, action verb, observ-
able functional performance, conditions of performance, and criteria for perfor-
mance (2,3). The functional goal should assist to demonstrate measurable, func-
tional outcomes of a treatment intervention. While it is not the main object of
this chapter to teach goal writing, we will provide definitions for these terms and
some examples.
The subject is the client, who will be demonstrating success of the goal.
The family or a caregiver may also be included in this category, if it is felt that
their ability to perform a specific task or skill will be beneficial to the infant and
enhance functional progress.
The action verb should be selected to show some posture or movement
that is consistent with the desired function. Some examples are walking, standing,
reaching, and cup drinking. Verbs that do not allow measurement of the outcome
function should not be used. Verbs such as ‘‘increase’’ or ‘‘will improve’’ are
often used by therapists and should be replaced with verbs that truly denote move-
ment or action.
Observable function performance is the movement skill that is directly re-
lated to the action verb. The movement or function selected should be consistent
with the child’s age, developmental status, and family concerns. Generally it is
important to write a beginning and an end for each movement; for example, Jack
will move from long sit to side sit, or Jenny will push up onto extended arms.
Constructing goals in this manner will make it easy for anyone to assess perfor-
mance with certainty.
The next element of the goal should define the conditions of the perfor-
mance; that is, the circumstances and environment under which the goals will
be evaluated. Use of specific performance conditions allows objective assess-
ment of the goals by you or another individual. Additionally, performance
conditions allow the therapist to adapt the goal to demonstrate progress, for
example:
Assessment, Treatment, and Intervention 191

Initial PT Goal: In a play setting, Jenny will push up on extended arms in

prone to view a toy as her therapist provides assistance and support at
the trunk.
Follow-Up PT Goal: In a play setting, Jenny will independently push up
on extended arms in prone to view a toy.
Initial OT Goal: In supported sitting, Jenny will bang a toy on a surface
using a gross radial grasp.
Follow-Up OT Goal: Sitting in a high chair, Jenny will bang a toy on a
surface using a gross radial grasp.
Initial Speech Goal: Sitting in a high chair, Jenny will drink thickened
liquids from a cup as her mother or therapist provides assistance at the
jaw.
Follow-Up Speech Goal: Sitting in a high chair, Jenny will drink thickened
liquids from a cup without assistance.
The last component of the goal is measurable or qualitative criteria to
assess the achievement of the performance. Accuracy, distance, and speed can
all be used to measure how well the performance is executed. The criteria can
also demonstrate changed or improved performance, for example:
Initial Speech Goal: Sitting in a high chair, Jenny will drink thickened
liquids from a cup as her mother or therapist provides assistance at the jaw.
Follow-Up Speech Goal: Sitting in a high chair, Jenny will drink nonthick-
ened liquids from a cup as her mother or therapist provides assistance
at the jaw.
The therapist must determine whether to alter the conditions of performance
or the criteria of performance to demonstrate progress. In some cases, when the
infant is making rapid progress, it may be necessary to alter the condition of
performance. When the infant is making slower progress, it may be necessary
to alter the performance criteria. In either case, you have two choices, which
allows you to customize the goals for each infant.
After sitting with the family to write functional goals, therapists will use
these goals to create the therapy treatment plan and treatment strategies, which
will be presented in the next sections. The goals will also be used to develop the
multidisciplinary intervention plan and to document progress during treatment.
The creation of the multidisciplinary intervention plan and documentation proce-
dures will be presented in Chapter 8.

IV. TREATMENT PLANNING

Following the written assessment and development of functional goals, treatment

planning and development of individual treatment strategies are the logical next
192 Girolami et al.

steps. Treatment planning is the creation of the road map the therapist follows
to assist the client in achieving the functional outcomes identified by the goals.
It is the thought process used by the therapist to prioritize impairments related
to a specific goal and to develop treatment strategies to address each impairment.
Treatment planning is used to identify and prioritize the most significant system
impairments, and to select strategies to address each of those impairments. How-
ever, the challenge for the therapist goes beyond merely selecting treatment strat-
egies; it is also to determine the most efficacious sequence for the strategies
(Fig. 2).
The data gathered during the assessment provide the foundation for the
treatment planning process. Earlier in this chapter we discussed the importance
of listing the infant’s strengths and identifying and hypothesizing which impair-
ments interfere with age-appropriate function. Additionally, we wrote functional
goals to serve as a baseline for assessing change over a specified period of time.
For novice therapists, it may be helpful to use a form to organize this infor-
mation. A treatment plan worksheet has been provided to assist therapists in this
process (Table 1). Over time, the therapist will be able to process this information
cognitively without using this written format.

A. Filling-In the Treatment Planning Worksheet

The worksheet can be used to assist the therapist in planning treatment for each
identified functional goal. This insures the development of specific treatment
strategies to address the various system impairments interfering with the acquisi-
tion of each goal.
This treatment planning worksheet provides an outline that directs the ther-
apist to:

Select an identified goal from the written assessment

List and prioritize the impairments that interfere with the acquisition of
each goal
Identify and sequence treatment strategies to minimize the effect of the
impairments
Assess the effectiveness of each strategy and reflect on how to adapt or
modify the strategy.

1. Select an Identified Goal

Well-written functional goals are the key to good treatment planning. As stated
earlier in this chapter, the goals should be meaningful to the family and important
to the child’s current developmental stage. The therapist will need to develop a
treatment plan for each of the identified goals.
Assessment, Treatment, and Intervention 193
Steps in treatment planning.
Figure 2
 194
Table 1 Treatment Planning Worksheet

Name of Patient and Diagnosis Date:

Functional Goal–Taken from assessment or progress note Impairment List–Prioritize impairments relative to functional
limitations

Treatment Strategies
Sequence strategies relative to prioritized Expected Outcome–For each intervention Effectiveness–(Do you need to modify or
impairments eliminate the strategy?)

Girolami et al.
Assessment, Treatment, and Intervention 195

2. List and Prioritize System Impairments

Next, the therapist must list the system impairments that interfere with the acqui-
sition of that goal. It is sometimes useful to break the goal down into component
parts and determine which impairments must be addressed to allow improved
performance of the functional task associated with that goal. It is important to
note that working on component parts of a goal can be an effective way to treat,
but only if those parts are eventually reincorporated and the functional task is
practiced in its entirety (4,5).
In either case, simply listing the impairments is not enough. The therapist
must next prioritize and sequence these impairments, determining which should
be addressed first to achieve the best outcome during each treatment session.
Consistent success during treatment will improve the probability of achieving
the desired functional goals. Prioritizing and sequencing the impairments is both
an art and a science. The therapist must rely on an in-depth understanding of the
involved systems, clinical reasoning, and intuition.

3. Identify and Prioritize Treatment Strategies

After prioritizing the impairments, the therapist will develop treatment strategies
designed to minimize each of the identified system impairments. Often, with
experience, it is possible to develop treatment strategies that pertain to multiple
impairments simultaneously. This allows the therapist to address the most crucial
impairments throughout the session in a variety of activities and positions, and
permits the infant to experience and practice new ways of stabilizing and transi-
tioning within the environment.
Each treatment strategy can be broken down into many components, each
of which must be considered. Clinical judgments must insure that the strategy
truly addresses the identified impairment, thus leading to the optimal functional
outcome. This process will be discussed in greater detail later in the chapter, and
a template is provided to help organize each strategy.
Embrey and Hylton (6) have demonstrated that experienced physical thera-
pists have more available treatment scripts and intervention strategies than novice
therapists do. In addition, experienced therapists were able to select and alter
these strategies with greater speed and variety than novice therapists. This would
indicate that treatment planning is an art that can be learned and improved over
time.

4. Assess Outcomes of Treatment Session and Strategy

Finally, following the treatment, the therapist should assess the effectiveness of
the session, and the effectiveness of each treatment strategy. The therapist should
review the outcome of the treatment session related to the goals or components
196 Girolami et al.

of the goals. It is important to objectively analyze the performance of the infant

at the end of the session, and to compare this to the infant’s performance at the
beginning of the session. Asking some of the following questions may be helpful
in evaluating the success of the intervention:
Did the infant/toddler perform any part of the functional skill with im-
proved posture or alignment?
Did the infant/toddler demonstrate an ability to perform the task with less
guidance?
Did the infant/toddler perform some component of the task with greater
ease, more speed, less verbal cueing, or greater motivation?
These questions may be helpful in modifying aspects of the treatment ses-
sion to improve the effectiveness of treatment. This may include identifying addi-
tional impairments not observed during the initial assessment, revising or creating
new treatment strategies, or even adjusting the environment to produce more
effective outcomes (7,8).
The importance of treatment planning cannot be overlooked. It provides
an organized, individualized approach to intervention. It allows the therapist to
direct the therapy session more effectively, insuring that the following guidelines
for treatment planning are incorporated into each session. The end result will be
more effective intervention and greater gains for the client.

B. Guidelines for Treatment Planning

It is helpful to observe a number of guidelines when planning treatment:
1. Communicate with the family on a regular basis. The family is an
important part of the team, and they should be included in goal writing, treatment
planning, and regular conferences to discuss any changes in the intervention pro-
tocol.
2. Start from a position of strength. List the child’s strengths and discuss
these with the family. This provides an opportunity for you to acknowledge that
you recognize each child as an individual. The family will appreciate this affir-
mation, and you can employ these strengths as you plan treatment strategies.
3. Goals should be functional. We cannot stress this enough. If you do
not work on functional activities, you will not see the infant incorporate these
skills into his daily life. Try to incorporate the remediation of the primary system
impairments into goals that highlight the functional tasks the family must address
daily. This approach insures greater compliance and directly addresses the imme-
diate needs of the infant and the family.
4. Goals should be meaningful to the family. The family will embrace
the goals with greater enthusiasm if you include them in the development process.
The goals should be directed toward functions that are age appropriate for the
Assessment, Treatment, and Intervention 197

child or assist the family in caring for their child. Parents often select goals that
are too advanced for their child. There is often a need to educate the family about
development to allow them to embrace goals that form the foundation for the
long-term functional outcomes that they desire.
5. Address the regulatory issues first. If the infant has difficulty with regu-
lation, find ways to calm and maintain state balance first. Use this information
to assist the infant in reorganizing himself as you introduce activities that chal-
lenge him. Use these calming and organizing strategies as you introduce sensori-
motor input. You should introduce new movements slowly and always be aware
of the infant’s signals of distress, so you can assist in more adaptive responses
(9).
6. Take time to build a relationship based on trust. Be playful and engag-
ing in your interactions. Learn the infant’s communication style and pay attention
to what elicits playfulness in the child. It is comforting and builds trust when the
parents see their infant enjoying the treatment session. It will also produce a
positive experience that can have an important effect on future treatments.
7. Create a motivating environment. Motivation is said to alert and arouse
the brain. The conditions of the internal and external environment need to be
appropriate to produce motivated behavior. The internal environment needs to
be receptive to incoming stimuli (i.e., adequate self-regulation in the infant). The
external environment should provide reasonable opportunities for the infant to
act on and form relationships with objects and people (10).
In addition, the stimuli must be meaningful to be motivating and engaging.
Infants are typically motivated by novelty, increased sensory properties of ob-
jects, and positive interactions. The interactions or objects must also be develop-
mentally appropriate, easily initiated, and provide a challenge (11).
Therefore, knowledge of age-appropriate toys and ways of interacting are
important. Children with cerebral palsy generally have preferences related to their
motor and sensory abilities (12). Incorporating assessment information regarding
the infant’s preferences for specific sensory input is critical and will aid in the
selection of motivating stimuli.
8. Preparation is not a BAD word. With the emphasis on function, thera-
pists have come to see preparation as something that should be excluded from
treatment plans. However, one might view preparation as those activities that
allow the child to more effectively produce the desired functional outcome. Activ-
ities that increase mobility improve alignment and sensorimotor knowledge of
the movement (i.e., passive movement to allow the child a sensory experience
of the movement) can all be beneficial treatment strategies. For example, if a
child has very tight hamstrings, it is important to stretch these muscles before
introducing functional activities in long sitting.
9. Integrate sensory input to enhance motor output. The first year of life
is predominately a sensorimotor stage of development (13). Sensory feedback is
198 Girolami et al.

important in learning new motor skills; sensory systems contribute to the produc-
tion of movement (14). All handling has inherent sensory input; this applies to
direct input from the therapist as well as input from the environment, including
equipment, toys, lighting, and ambient sound. Be aware of your handling speed,
tactile input, direction of movement, voice, arrangement of the environment, and
combinations of input. How and where you place your hands to provide control,
direction, and sensory input must be carefully predetermined and changed to
assist, guide, and direct the infant’s movement (15). All sensory input can be
facilitatory or inhibitory depending on the infant’s perception, state of his central
nervous system, and how the input is introduced. Be purposeful in the sensory
input created by handling, the activities structured, and the interactions presented.
Modify input to maximize adaptive responses from the infant.
10. Integrate play activities into treatment. Play, whether structured or
spontaneous, can provide motivation, direction, and reinforcement of optimal
movement patterns and function. The therapist who can integrate play and cre-
ativity into the treatment session will likely see better cooperation and motivation
in their client (16). On the other hand, the therapist must realize that highly struc-
tured play may inhibit motivation and prevent problem solving and the initiation
of new motor behaviors.
11. Allow the child to plan and initiate motor behaviors. Both the task
and environment determine how the child will organize his postural system to
perform the function (17). During each treatment session, it is important to set
up situations that require the child to plan and initiate a variety of motor behav-
iors. The skills must be practiced in diverse environments to insure the child can
effectively alter the postural organization necessary for control.
12. Allow the child adequate time to problem solve. It may take time for
the child to problem solve in novel situations. The therapist must step back and
permit the child to assess the situation and attempt a variety of movement plans
to achieve the desired goal. Knowledge of results is an integral part of learning
new skills (18,19). Knowledge of results can be provided through various forms
of visual, auditory and kinesthetic feedback (20). Children who have increased
processing requirements must be allowed the time to work out the answer before
the therapist steps in to assist or guide his movements.
13. Practice and repetition are essential. It is extremely important for
the therapist to allow adequate time for practice and repetition when the infant
is learning new skills. The therapist should provide an environment that motivates
the infant to repeat new motor plans and skills that have been worked on during
the treatment session (7). It is also important for the therapist to know what type
of practice will effect the most optimal outcome. For example, distributed prac-
tice is more effective than massed practice to facilitate learning of new skills
(21). Distributed practice requires rest periods that equal or exceed the time it
Assessment, Treatment, and Intervention 199

takes to perform the task. This prevents excessive fatigue and keeps the task
challenging rather than boring. Practice should also be scheduled in a variety of
environments. These environments should mimic those which are representative
of the infant’s day. The therapist might use different surfaces or locations to
allow the infant to perform the task in a variety of environmental situations.
14. Therapist handling should decrease as the infant acquires skill. The
therapist must continually assess the infant’s ability to perform a task and with-
draw guidance to provide an opportunity for the infant to practice unaided.
Schmidt (5) has found that guidance is more effective when used in the early
practice of an unfamiliar task. Guidance should be used judiciously, allowing a
balance between handling and practice.

V. DEVELOPING EFFECTIVE TREATMENT STRATEGIES

During the treatment planning process, the therapist has identified functional limi-
tations, and one or more written goals that address each of the functional con-
cerns. As part of this process, impairments that interfere with acquisition of each
goal are prioritized and listed, and general interventions are generated for each of
the identified impairments. In this section, we will provide a model for developing
treatment strategies for each of the identified interventions that specifically ad-
dress all of the impairments, thus maximizing the functional performance of the
infant.
We have developed a worksheet to assist the therapist in designing treat-
ment strategies that address the identified goals (Table 2). It is important to re-
member that each of the goals may have numerous intervention strategies because
there may be multiple system impairments that interfere with the acquisition of
each goal.

A. General Considerations
At the top of each treatment strategy template, a specific goal is identified. Fol-
lowing this, the impairment or impairments to be addressed are listed. Each of
the impairments must have a specific treatment strategy to minimize the effect
on the infant’s function. In some cases, several impairments may be addressed
by a single intervention strategy, but, in other cases, the impairment may be so
specific that it will require a single intervention or several intervention strategies.
Regardless of the impairment being addressed, motivation, mobility, alignment,
base of support, sensory input, and environment are key components of every
intervention strategy.
Table 2 Treatment Strategy Worksheet
Goal: specific, measurable outcome desired:

200
Element Description Rationale/Explanation
Impairment:
Specific impairment being addressed
Anticipated results of this strategy
Patient:
Starting position, including center of gravity
(COG) and base of support (BOS), WB/
NWB areas, as well as other critical as-
pects
Equipment/supplies
Position of equipment
Desired response:
parts of the body involved in the activity
direction/plane/axis/speed of the movement
mobile/stable segments
desired muscle activity
Therapist:
Starting position, including COG and BOS
Movement of the therapist:
anticipated direction and plane of motion
Handling:
Keypoints of control; direction and firmness
of pressure; timing and other aspects of

Girolami et al.
input
Tactile/proprioceptive modalities (e.g., pres-
sure, tapping traction, approximation, vi-
bration, use of temperature)
Other sensory input
(e.g., auditory, verbal cues, visual, vestibular,
as well as taste and smell)
 Assessment, Treatment, and Intervention
Modifications Expected outcome
Potential problems/additional considerations

Acutal results/outcome obtained from use of

this strategy:

Possible adaptation/modification/progression:

201
202 Girolami et al.

B. Infant Considerations
In each treatment strategy, there are two major players: some aspects of the strat-
egy are specific to the infant and some aspects are specific to the therapist. Each
of these considerations has specific areas that must be addressed. With regard to
the infant, the therapist must determine the starting position; for example, sitting,
prone, or standing. Some considerations include the infant’s base of support and
what parts of the body will be weight bearing or non-weight bearing. This can
be influenced by a variety of factors: the functional goal, the age of the infant,
the ability of the infant, and motivation. The equipment used to achieve the de-
sired outcome must also be selected, as well as the size and positioning of that
equipment. There are definite reasons to work with a child on your lap, on a ball,
or over a roll, which may be related to the activity, the infant’s sensory issues,
or the need for a stable versus a mobile surface. Finally, the therapist must be
keenly aware of the desired outcome of the treatment strategy. In what direction
do I want the child to move? What muscle groups am I trying to activate? What
sensory information or experience am I trying to provide for this infant? These
are just a few of the questions that must be considered.

C. Therapist Considerations
Therapist considerations are also an important aspect of the treatment strategy.
We must decide how to best position ourselves to optimize the desired response
from the child. There are specific reasons to be in front of the infant, behind the
child, or adjacent to the infant. These reasons may be related to the equipment,
the anticipated movement of the infant, or the sensory requirements of the infant.
Movement or stability of the therapist must also be planned. The therapist must
also determine whether they will move with the infant or remain stable during
the intervention. This can mean movement around the environment or intrinsic
weight shifting and movement of the therapist as she provides treatment. With
regard to handling, the therapist must determine which sensory modalities to
employ, how to provide guidance, and when to withdraw assistance and handling.
Another aspect of handling is selection of appropriate key points of control. The
Bobaths (22) first used the phrase describe the choice and modification of hand
placement to guide and assist the infant’s movement.
Embrey and Adams (15) have studied the ability of novice and expert clini-
cians to select and modify procedures and key points of control contingent on
the responses of the child. Experienced therapists changed their procedures and
therefore key points of control every 46 s compared to novice therapists, who
altered their handling every 86 s. They also noted that the therapists changed
their posture in harmony with the infant. The changes were smooth while those
of the novice therapists were abrupt.
Assessment, Treatment, and Intervention 203

With experience, the therapist can more easily and intuitively change the
therapy strategy, responding almost instantly to the postural changes, movements,
or motivation of the child. This may mean increased or decreased handling, less
facilitation, and more guidance or even altering the play activity.
Structuring the environment is another important aspect of the intervention
strategy. The therapist must consider the amount of visual, auditory, tactile, and
proprioceptive stimuli to offer. Additionally, thought must be given to where the
session will occur and whether it will be individual or group treatment. Each of
these decisions is as critical as the selection of the strategy itself. Finally, and
perhaps most importantly, each treatment strategy must be motivating and lead
to a functional outcome that will be practiced during the treatment session. Al-
though all these considerations may seem overwhelming, especially to the novice
therapist, with experience they become more automatic and easier to incorporate
in the treatment plan.
During each treatment session, the therapist must determine how long to
apply each strategy, and when to adapt or change strategies, based on the response
of the child. Evaluation and revision of the treatment strategies should also occur
at the end of each session, in preparation for the next treatment. Additionally,
evaluation and revision of the treatment plan and intervention strategies should
take place each time a progress note is written. Answering the following questions
may be helpful in evaluating the success of your treatment strategies and making
necessary modifications.
Did this strategy produce the expected effect?
Did I have to modify the strategy significantly?
Did I use this strategy only briefly, perceiving that it was ineffective?
Was the strategy ineffective or do I only need to change some aspect of
the strategy (e.g., the equipment, the position, the play activity)?
This analysis will also prevent the application of ineffective treatment strat-
egies, which may be detrimental to the infant over time.

VI. CHAPTER SUMMARY

In this chapter we have presented models for documenting assessment data, goal
setting, treatment planning, as well as developing treatment strategies. This plan-
ning is critical and must be completed before treatment begins. Without careful
data analysis, well thought out functional goals, attention to treatment planning,
and development of impairment-related intervention strategies, the efficacy of
your treatment will be severely compromised. This impacts not only on clinical
performance and self-esteem, but also, more importantly, on the developmental
and functional outcomes for infant and the well being of his family.
204 Girolami et al.

Yes, the process can be labor intensive. However, as aptitude at analyzing

the data improves and the depth of clinical reasoning becomes more sophisticated,
the therapist will find it less time-consuming to complete this process, increasing
the benefits for the client and personal and professional satisfaction.
Chapter 8 discusses alternative options for treatment implementation and
methods to document progress, evaluate and revise functional goals, and alter
intervention strategies based on client outcomes. Chapter 9 shows how the pro-
cesses outlined in Chapters 6 to 8 can be effectively applied to assess and plan
treatment for a 10-month-old infant with a diagnosis of cerebral palsy.

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tion. Baltimore: Williams and Wilkins, 1995:28–37.
18. Gentile AM. Skill acquisition: Action, movement, and neuromotor processes. In:
Carr JH, Shepherd RB, eds. Movement Science. Rockville, MD: An Apsen Publica-
tion, 1987:93–154.
19. Schmidt RA. Motor learning principles for physical therapy. In: Van Sant AF ed.
Contemporary Management of Motor Control Problems. Washington, DC: Founda-
tion for Physical Therapy, 1991:49–64.
20. Higgins S. Motor Skill Acquisition. Phys Ther 1991; 71:123–139
21. Schmidt RA. Motor learning and performance. Champaign, IL: Human Kinetics,
1991.
22. Bobath K, Bobath B. The neurodevelopmental treatment. In: Scrutton D, ed. Man-
agement of the Motor Disorders of Cerebral Palsy. Clinics in Developmental Medi-
cine, No. 90. London: William Heinemann Medical Books Ltd, 1984.
8
Treatment Implementation,
Reassessment, and Documentation
Gay L. Girolami
Pathways Center, Glenview, Illinois
Diane Fritts Ryan and Judy M. Gardner
DuPage Easter Seals, Villa Park, Illinois

I. INTRODUCTION

After performing the initial assessment, writing up the assessment and goals, and
planning treatment, the therapist is now ready to intervene. Figure 1 details the
entire intervention process: the clinical assessment (Chapter 6), the written assess-
ment, treatment plan, and intervention strategies (Chapter 7), and the service
delivery format, documentation, and reassessment (this chapter).
There are a variety of models to select from when implementing therapy
services. Interventions may be provided using the traditional direct therapy
model, consultation, or group treatment. The format selected will strongly depend
on the individual needs of the infant and constraints of the family. Therapy can
be provided in a clinic, at home, or as part of a 0 to 3 program. This chapter
provides descriptions of each of the service delivery models, as well as a discus-
sion of various adjunct therapy services.
Regardless of which therapy model is employed, written documentation
must be produced to validate the treatment plan and assess progress and func-
tional outcomes. In this chapter, the various types of documentation will be dis-
cussed and sample forms provided to assist the therapist in this process.
Finally, consideration must be given to the reassessment process. This pro-
cess is used to assist therapists and families to redefine the impairments that

207
Figure 1 Intervention process.
Treatment Implementation, Reassessment, and Documentation 209

continue to interfere with function, and to revise the recommendations and goals
to reflect the infant’s current functional status.

II. CONSIDERATIONS THAT INFLUENCE THE FAMILY’S

SELECTION OF TREATMENT SERVICES

Following the clinical assessment, the multidisciplinary team summarizes the

findings and makes recommendations for intervention including the types of ther-
apy and the frequency of treatment. It is important to design accessible service
delivery systems that are culturally competent and responsive to family identified
needs (1). The following are principles to guide the family and therapist when
determining the format, frequency, and sequencing of treatment:

The family’s need or concern exists only if the family perceives that the
need or concern exists.
The identification of family priorities and concerns is based on an individ-
ual family’s determination of which aspects of family life are relevant
to the child’s development.
The identification of family resources, including emotional, financial, and
environmental constraints (2).

A. Family Concerns
During the assessment, it is important for the multidisciplinary team to be aware
of the family’s concerns. This information can provide a framework for the pre-
sentation of the assessment data and recommendations for intervention. When
the family’s concerns are not acknowledged, the therapists’ recommendations
may seem irrelevant or unsympathetic to the family’s perception of their child.
A family may come to an assessment with specific concerns regarding their
infant. Following the discussion of the assessment data and recommendations,
unexpected issues can be revealed, and the family may need time to process this
information. In some cases, the information may not only be unexpected, but
difficult for the family to accept. The ultimate decision to accept or modify the
recommendations belongs to the family. By recognizing and respecting the fami-
ly’s strengths and methods of coping, the team is better able to assist them in
understanding the assessment data and the rationale for the recommendations.
In another scenario, a family may be concerned about whether their infant
is able to tolerate the amount of intervention recommended. The medical fragility,
significance of regulatory issues, or young age of the infant may initially require
treatment recommendations to be altered. For example, one discipline may initi-
210 Girolami et al.

ate regular direct therapy with consultative intervention from the other disci-
plines.
In another situation, a family may be apprehensive about the treatment
recommendations because they may not be familiar with the different therapies,
particularly as they relate to the immediate concerns they have for their infant.
Educating the parents about the specific role of each discipline and its function
in the assessment and intervention process is critical to the family’s understanding
and acceptance of the intervention recommendations.

B. Family Priorities
It is important for the team to recognize that the family’s priorities for their infant
may be different than that of the team. For example, a family who has an infant
with a history of poor weight gain may not be able to relate to other identified
impairments that affect gross and fine motor function. The team may need to
modify the focus of their recommendations and interventions, and relate them
more specifically to the family’s immediate priorities. When high-priority goals
are targeted first, family members are more likely to be incentivised to participate
in the treatment plan. If these priorities are adequately managed, the family may
be more open to work on other therapy goals initially viewed as less important
(3). Acknowledging the family’s priorities will also engender trust in the therapy
team and build the foundation for open communication and empowerment of the
family.

C. Family Resources
The family resources are the strengths, abilities, and supports that can be mobi-
lized to meet the family’s concerns and needs (2). The therapist must be able to
recognize and respect the family needs and concerns regarding their resources.
Some of the variables that can impact on the family’s decisions regarding therapy
recommendations may include financial resources, transportation, distance to
travel, time schedules, and the health and well-being of the family. Therapy is
seen as a dynamic process in which therapists and parents work together as part-
ners to define and prioritize the needs of the infant with cerebral palsy (CP) (4).

III. SERVICE DELIVERY MODELS

The intervention model selected should be individualized, flexible, and accessible

for the infant and his family. Some of the most common models include direct
one on one, consultative, and group therapies. When possible, the child’s natural
environment is the preferred location.
Treatment Implementation, Reassessment, and Documentation 211

A. Direct Therapy Model

Direct one-on-one intervention is often the initial model. This allows the therapist
to work directly with the parent and infant. The therapist is able to address the
concerns, frustrations, and changes that often occur more frequently in infants.
In addition, the more frequent direct contact increases the comfort level and trust
between the infant and therapist as well as the therapist and parents. In the direct
treatment model, the therapist can more accurately gauge the input they are pro-
viding, address parental concerns, and modify intervention strategies and home
programs. As progress is made, the therapist can alter the frequency of the treat-
ment sessions based on the immediate needs of the infant and the comfort level
of the family.
During each treatment session, time should be allotted to discuss how the
session goals relate to the desired functional outcomes. Throughout the session,
the parent should be encouraged to participate in the handling strategies by play-
ing and interacting with their infant. The therapist should also teach and provide
an opportunity for the parent to practice handling strategies and home-program-
ming activities. This may include positioning with the use of equipment or sug-
gestions for holding, carrying, diapering, bathing, feeding, or other activities of
daily living. The parent’s participation in the therapy program increases their
understanding of the treatment goals and their comfort level in caring for their
infant. At each subsequent treatment session, the therapist should begin by ad-
dressing questions or concerns the parents may have regarding their infant’s prog-
ress, goals, or home-programming activities.

B. Consultative Model
In some situations, the therapist will take on a consultant’s role to the parents
or other facilitators working with the infant. This is often the model of choice
for an infant who is unable to be brought to the clinic because of medical or
family reasons. The consultative model can also be used for those infants whose
functional goals can be addressed by providing the parents with a home program.
In either case, the home program provides the family with suggestions and strate-
gies that can be implemented as part of the daily routine. The intervention strate-
gies should incorporate the infant’s emerging skills, including those that can be
elicited by positioning changes, equipment adaptations, or environmental adjust-
ments. Follow-up sessions are scheduled to modify the home program, respond
to parental concerns, and to make recommendations for other services.

C. Group Model
In this model, infants with similar functional goals can be treated together with
one or more therapists providing handling suggestions to the parents or caregiv-
212 Girolami et al.

ers. The therapists structure the sessions to provide opportunities for handling
practice and suggestions for home program activities. The group model provides
advantages for both the parent and infant. The group setting enables parents with
similar concerns to communicate and to offer support to one another. The infants
may benefit from the opportunity to be treated in an environment that fosters
motivation and interaction with their peers. For the infant with sensory or regula-
tory issues, a group environment may be less stressful, and therefore a more
effective delivery model.
In some cases, the group model can be used to facilitate infants as they
transition from direct services into day care or community-based programs. Alter-
natively, both the direct therapy and consultative models can be employed to
provide intervention in playgroups, day care, or infant stimulation programs.
These settings provide an excellent forum for the carryover of intervention strate-
gies, positioning, and activities of daily living designed to achieve the desired
functional outcomes. Often these environments provide the opportunity for in-
fants to learn and model their nondisabled peers in both motor as well as social
behavior.

D. Summary of Models
There are many creative and innovative ways of implementing these service de-
livery models. The model providing the most comprehensive and collaborative
intervention that integrates the infant’s therapy needs and the family’s priorities
and resources should be selected.
The following questions may be helpful to the therapist when determining
which of the above models is most appropriate for each individual infant and
family:
Is this the best service delivery model to meet infant’s identified goals?
Does the model selected meet the families identified goals, priorities and
resources?
Is the service being provided in the most family centered way?
Will this model contribute to the most optimal treatment outcomes?
Regardless of the model chosen for intervention, communication between the
family and all team members is essential.

IV. ADJUNCTS TO THERAPY

In addition to therapy, and regardless of the model selected, adjunctive interven-

tions should be considered when planning and implementing treatment. The in-
Treatment Implementation, Reassessment, and Documentation 213

fant’s daily activities offer opportunity to incorporate the home programming

into natural routines. How the infant is positioned, carried, and handled, and how
the infant moves independently contributes to the development of body image
and acquisition of functional skills. It is critical for the infant to incorporate these
daily experiences using the most normal movement patterns possible as he learns
how his body functions with greater independence and coordination. The thera-
pist can be instrumental in recommending assistive technology, splinting, and
orthotics that make daily functions easier and more efficient.

A. Assistive Technology and Equipment

Assistive technology (AT) is the use of equipment, tools, and service animals to
allow persons with disabilities to actively direct the performance of tasks that
would otherwise be prevented or made difficult (5). Virtually anything that makes
a task easier to complete qualifies as AT. AT can include almost any useful
device, from high-tech computer-generated augmentative communication de-
vices, to seating and positioning equipment for the infant. Every day people with
and without disabilities use technology to function more fully in society.
Technology has become a powerful force in the lives of individuals with
disabilities. It has allowed people greater control over their own lives. They can
participate in and contribute more fully to activities in their home, school, work
environment, and community. In addition, AT enhances their ability to interact
with individuals who do not have disabilities (6). The use of assistive technologi-
cal devices and services by individuals with disabilities can reduce the costs of
the expenditures associated with early intervention, education, rehabilitation, and
health disabilities (6).
Even in its seminal stage, AT has enhanced the delivery of therapy services
and the acquisition of functional outcomes. For the young infant with cerebral
palsy, AT is an essential element of treatment implementation. This might include
a variety of commercially available infant seats to custom-made seating devices
that allow the infant to experience age-appropriate posture and activities before
he has the postural control to achieve them independently. It may also include the
use of more technology-advanced devices such as switches and communication
devices. Through AT, the infant is able to accomplish a variety of motor tasks
and achieve more functional independence.

B. Splinting and Orthotics

Infants with cerebral palsy may develop muscle contractures and structural de-
formities that impact on functional skills (7). The use of splinting and orthotics
to address these issues has been shown to improve postural control, hand function,
and to facilitate standing balance and gait. The use of splinting and orthotics is
214 Girolami et al.

preventative and conservative interventions should be applied early to enhance

functional outcomes (8).
Children with cerebral palsy move in restricted ranges of motion and de-
velop little variety in their movement patterns. In the upper extremities, wrist
flexion and hand fisting can interfere with functional reach and grasp. In the lower
extremities, knee extension with ankle plantar flexion is a common pattern that
may develop as early as 4 to 6 months in children with spastic CP. If this position
is not modified, this pattern will eventually result in the development of foot and
ankle deformities including equinus or equinovalgus (9).
The decision to use splinting and/or orthotics should be made as a team.
The orthopedist and therapist should discuss with the family the structural and
functional rationale underlying the use of a splint or orthotic device. However,
the professionals must respect the family’s ability to acknowledge and accept the
recommendation. The therapist may need to assist the family in understanding
how these devices may improve functional outcomes and prevent potential con-
tractures or deformities (10).

V. DOCUMENTATION

Once the model and frequency for therapy have been established with the family,
intervention can be initiated. Regardless of how the therapy is provided, docu-
mentation procedures must be implemented. Written documentation will be nec-
essary for a variety of reasons, including assessing progress and revising the
goals, treatment plan, and treatment strategies. Additionally, documentation is
essential to obtain payment from insurance or other funding sources.
Figure 2 is a schematic of the relationship between the treatment planning
process discussed in Chapter 7 and the documentation required to support the
treatment plan and goals. In this section, the various types of documentation,
including an initial treatment plan, daily notes, and progress notes, will be dis-
cussed.
If the infants assessed are enrolled in federally funded programs, the model
for the documentation may be predetermined. For infants enrolled in such pro-
grams, the Individualized Family Service Plan (IFSP) must be used (11). How-
ever, if the infants treated are not enrolled in a federally funded program, then
the following documentation formats may be helpful.

A. Initial Treatment Plan

The initial treatment plan will provide information regarding the starting date
and type or types of therapy to be administered, as well as the location and fre-
Treatment Implementation, Reassessment, and Documentation 215

Figure 2 Written documentation vs. therapist process.

quency of each therapy. Figure 3 provides an example of how an initial treatment

plan can be organized.
The functional goals, which have been developed with the family and used
by the therapists for treatment planning, serve as baseline outcome measures. For
each functional goal, the therapist should create a list of components that are
needed to achieve the goal. These are based on the impairments identified during
 216
Girolami et al.
Figure 3 Initial treatment plan.
Treatment Implementation, Reassessment, and Documentation 217

the initial assessment. For example, for a therapy goal such as Kaitlyn will inde-
pendently pull to stand to play at a small table, the components that Kaitlyn must
acquire to achieve this goal may include:

1. Ability to kneel with fully extended hips.

2. Ability to dissociate the lower extremities for half kneeling.
3. Ability to actively dorsiflex the ankle joint.
4. Ability to shift weight forward over the weight-bearing foot.
5. Ability to generate adequate muscle force to attain standing.

At the end of the initial treatment plan, space is provided to document information
regarding referrals to other professionals, consultations, or equipment suggestions
the family may want to consider.

B. Daily Documentation
Daily notes are an important part of treatment documentation; they provide a
means of chronicling the interventions, relating them to the functional goals,
assessing the effectiveness of the intervention strategies, and analyzing the out-
come of each session. The notes also provide a framework for communication.
Any member of the team, including the family and the infant’s physician, can
read these notes and clearly see the direction and emphasis of the treatment. In
addition, third-party payment strongly hinges on this documentation.
Figures 4 to 6 are examples of daily note formats that can be concisely
and quickly completed. The daily note can be generated monthly to document
all of the treatment sessions provided during that period of time. The note should
include identifying information, specifically the name and age of the infant, and
the name, discipline, and license number of the treating therapist. Following that
information, the discipline-specific goals and components are listed.
As a means of documenting each session, a series of treatment intervention
categories are listed on a grid followed by a space to document progress toward
the goals. The therapist places the number and letter of the goal and component
next to the applicable treatment intervention categories used during the session.
This format is used to indicate the relationship between the goals and compo-
nents, and each applicable treatment intervention category. Using the sample goal
and components from the initial treatment plan in Figure 3, if the therapist worked
on lower extremity dissociation to improve half kneeling, the letter 1b would be
inserted next to the range of motion, postural control, and strengthening treat-
ment intervention categories. In the space following the grid, a brief narrative
can be written describing the specific treatment interventions or the infant’s re-
sponses to those interventions. This permits the therapist to document changes
in behavioral performance and areas of continued concern.
218 Girolami et al.

Figure 4 Physical therapy daily progress notes and treatment plan.

Documentation about each treatment session allows the therapist to assess

the effectiveness of the interventions and, if necessary, to revise treatment strate-
gies. The daily notes insure that the treatment interventions are truly in sync with
the infant’s needs and address identified impairments and functional goals.

C. Progress Notes
Progress notes are written to review the infant’s current status and areas of contin-
ued concern, assess functional outcomes, and revise the goals, recommendations,
Treatment Implementation, Reassessment, and Documentation 219

Figure 5 Occupational therapy daily progress notes and treatment plan.

and treatment plan. It is important to reassess the infant more frequently than
you might assess an older child. The developmental changes seen in the first year
of life are significant and demand vigilant attention to insure that the treatment
plan and goals reflect the immediate needs of the infant.
In Figure 7, we have provided a progress note format. Figure 7a includes
pertinent data related to the infant and the therapist. This is followed by an update
of the infant’s current status and areas of continued concern. Frequency of ther-
220 Girolami et al.

Figure 6 Speech therapy daily progress notes and treatment plan.

Treatment Implementation, Reassessment, and Documentation 221

apy, attendance, home programs, equipment, surgeries, or orthotics are examples

of information related to the infant’s current status. Parental, medical, or environ-
mental concerns, as well as a review of the impairments that continue to interfere
with the acquisition of functional abilities, should also be included in this section.
This is followed by a discipline-specific summary of the infant’s progress,
changes in frequency or treatment, and recommendations for additional services
or other interventions that may benefit the infant.
In the first column of Figure 7b, the goals from the initial treatment plan
or previous progress note are listed. In the second column, the therapist should
comment on progress made toward achievement of each goal or impairments that
continue to interfere with achievement of the goal. There are check boxes to
indicate whether the goal has been achieved or will be continued, revised, or
replaced with a new goal. The goals are revised or rewritten to reflect the influ-
ence of the impairments, continued functional limitations, and the most pressing
concerns of the family. The new or revised goals are written in the third column
and become the baseline for assessing outcomes in the subsequent progress note.
As part of this process, the therapist must also review the treatment planning
worksheet and revise or create intervention strategies that are consistent with the
new goals.

VI. THE REASSESSMENT PROCESS

After 9 to 12 months of treatment, the infant should be reassessed using the

same initial assessment format detailed in Chapter 6. Following reassessment,
therapists should meet with the family to review the infant’s progress, update
the functional goals, and revise the treatment plan (see Fig. 8).
Following this meeting, a written reassessment should be generated. Perti-
nent subjective information from the previous year should be written in the cur-
rent status section in lieu of a medical history. The objective information will
require reassessment of each of the physiological systems to determine which
impairments continue to interfere with function (see Fig. 9).
In the summary, a list of new strengths, impairments, and functional limita-
tions should be generated. The functional limitations will reflect the discipline-
specific developmental issues that impede progress and interfere with acquisition
of the identified goals. Recommendations for therapy and/or further referral
should be provided, and the revised goals should be listed. As always, the treat-
ment planning worksheet and treatment strategies will also be revised based on
the new assessment information.
222 Girolami et al.
Treatment Implementation, Reassessment, and Documentation 223
Progress note and treatment plan.
Figure 7
224 Girolami et al.

Figure 8 Reassessment.
Treatment Implementation, Reassessment, and Documentation 225

Figure 9 Multidisciplinary reassessment.

226 Girolami et al.

VII. SUMMARY

This chapter has addressed options for treatment and family considerations that
may affect the implementation of those options. The importance of written docu-
mentation was discussed and examples of an initial treatment plan, daily notes,
and progress notes were provided. Finally, the importance of reassessment was
presented along with a format for writing up the reassessment information.
The implementation of therapy for the infant with cerebral palsy focuses
on function and attempts to optimize the infant’s ability to respond to daily physi-
cal needs and activities. In order to accomplish this objective, therapy must be
a continuum of assessment–treatment planning–intervention–and reassessment
until the identified functional outcomes have been achieved. A guide to this pro-
cess has been detailed in Chapters 6 to 8. An example of this continuum is out-
lined in Chapter 9 in a case study of a 10-month-old with cerebral palsy.

REFERENCES

1. Smith B. The Division for Early Childhood Position Statements and Recommenda-
tions Relating To P.L. 99–457 and Other Federal and State Early Intervention Poli-
cies. Washington, DC: Division for Early Childhood of the Council for Exceptional
Children, 1987.
2. Kaufmann RK, McGonigel MJ. Identifying family concerns, priorities, and re-
sources. In: McGonigel MJ, Kaufmann RK, Johnson MK, eds. Guidelines and Rec-
ommended Practices for the Individualized Family Service Plan, 2d ed. Bethesda:
Association for the Care of Children’s Health, 1991:47–56.
3. Case-Smith J. Defining the early intervention process. In: Case-Smith J, ed. Pediatric
Occupational Therapy and Early Intervention. Boston: Butterworth-Heinemann,
1998:27–48.
4. Law M, Darrah J, Pollock N. Family-centered functional therapy for children with
cerebral palsy: an emerging practice model. In: Law M, ed. Family-Centered Assess-
ment and Intervention in Pediatric Rehabilitation. New York: Hawthorne Press,
1998:83–102.
5. Seelman KD. What Is Assistive Technology? National Institute on Disability and
Rehabilitation Research. Washington D.C.: U.S. Department of Education, 1999.
6. Technology-Related Assistance for Individuals with Disabilities Act of 1988. Assis-
tance for Individuals with Disabilities Act of 1988. Public Law 100–407. August
19, 1988:1383.
7. LeVeau BF, Bernhardt DB. Developmental biomechanics: effects of forces on the
growth, development and maintenance of the human body. Phys Ther 1984; 64:
1874–1882.
8. Cusick BD. Splints and casts: managing foot deformity in children with neuromotor
disorders. Phys Ther 1988; 68:1903–1912.
9. Hainsworth F, Harrison MJ, Sheldon TA, Roussounis SH. A preliminary evaluation
Treatment Implementation, Reassessment, and Documentation 227

of ankle orthoses in the management of children with cerebral palsy. Dev Med Child
Neurol 1997; 39:243–247.
10. Olney SJ, Wright S. Cerebral palsy. In: Campbell SK, ed. Physical Therapy for
Children. Philadelphia: WB Saunders Co, 1995:489–523.
11. Dunst CJ. Implementation of the individualized family service plan. In: McGonigel
MJ, Kaufman RK, Johnson BH, eds. Guidelines and Recommended Practices for
the Individualized Family Service Plan, 2d ed. Bethesda: Association for the Care
of Children’s Health, 1991:67–77.
9
Assessment and Treatment
Planning
A Case Study

Gay L. Girolami
Pathways Center, Glenview, Illinois
Diane Fritts Ryan and Judy M. Gardner
DuPage Easter Seals, Villa Park, Illinois

I. CASE STUDY: MICHELLE

A. Introduction
In Chapters 6–8, principles for executing an interdisciplinary assessment, as well
as planning and implementing treatment, have been described. Templates to assist
the team in organizing information and developing strategies have also been dis-
cussed. This chapter presents a case study of Michelle, a 12-month-old infant
with cerebral palsy. The assessment principles and forms discussed in the previ-
ous three chapters will be used to provide an actual example of how the informa-
tion gathered during a multidisciplinary assessment can be organized and treat-
ment planning and intervention can be planned and executed.

B. Assessment
The assessment is performed to gather data regarding the family’s concerns and
the infant’s strengths, impairments, and functional limitations. After analysis of
these data, the assessment is written, goals are developed, and the treatment plan
is finalized. This section presents this process for the infant in the case study.

229
230 Girolami et al.
Assessment and Treatment Planning 231
Assessment worksheet.
Figure 1
232 Girolami et al.

1. Assessment Worksheet
Before writing the assessment, it is important for the team to fill out the Assess-
ment Worksheet (see Fig. 1). This form is designed to assist the therapist in
identifying the infant’s strengths and sorting and analyzing the data collected
during the assessment.
In column 1, observations about the infant’s alignment, muscle activity,
and movement capabilities in the various performance areas are listed. Reviewing
the Assessment Worksheet for this case study (Fig. 1), the reader will note that the
observations are divided by areas: upper body, trunk, and lower body. Organizing
observations by areas of the body seems to be a more efficient means of organiz-
ing data. Observations can also be listed by performance areas, but, eventually,
impairments will recur in each performance area.
After listing the various observations concerning how the infant moves, the
team must hypothesize why; that is, which systems may be impaired. It is impor-
tant to consider how each system may contribute to the postures and movements
observed. These hypotheses are listed in the impairment column on the Assess-
ment Worksheet.
Finally, discipline-specific, age-appropriate, functional limitations are
listed in column 3. These functional limitations will form the foundation for the
construction of the functional goals, in addition to other goals that the family
may have for their infant.

2. Written Assessment
The format for the written assessment for this case study was outlined in Chapter
7. This begins with history or background data and may include the reasons for
referral, medical history, parent concerns, and pertinent information from other
professionals who have evaluated the infant.
This is followed by the observations or assessment data and includes infor-
mation about the infant’s functional abilities and impairments in the various sys-
tems. Filling in the Assessment Worksheet will be very beneficial and assist the
therapist in creating the written information related to the assessment data.
Finally, a summary of the infant’s strengths, age-related functional limita-
tions, and impairments is written. Then recommendations for the type and fre-
quency of interventions are specified, along with a list of general discipline-
specific goals. These goals will be presented to and discussed with and finalized
with the family. The final goals will be recorded in the Initial Treatment Plan
(see Fig. 2) and become the baseline outcomes for measuring progress.
For this case study, the background data and summary information are pro-
vided in a narrative format. The content for the assessment data can be found in
the Assessment Worksheet (Fig. 1) and will not be written in narrative form. The
Assessment and Treatment Planning 233
Initial treatment plan.
Figure 2
234 Girolami et al.

recommendations for therapy and the functional goals can be found in the Initial
Treatment Plan (Fig. 2).

(a) Background Data. Michelle is 12 months old, with an adjusted age

of 10 months. She was the first of triplets born by C-section at 29 weeks gesta-
tional age. Her birth weight was it 1.9 kg, and she was hospitalized for the first
7 weeks of life with the following complications:

Twin-to-twin transfusion syndrome (multiple blood transfusions)

Severe cardiomyopathy (treated and gradually resolved)
Ventilator dependent with meds for first 10 days
Grade II retinopathy (no treatment recommended)
Mild apnea of prematurity (treated with theophylline and weaned by 1
month)
Mild pulmonic stenosis and bronchiolitis (treated with albuterol)
Left corioplexis hemmorrage (resolved)

Both the physician and parents were concerned about her slow motor develop-
ment. She was referred at 7 months adjusted age for a multidisciplinary evalua-
tion. Her parents became concerned because, when compared to her siblings,
Michelle’s motor development was delayed and her extremities were stiff and
difficult to bend.

(b) Observations. The strengths, observations, impairments and func-

tional limitations are documented on the Assessment Worksheet in Figure 1.

(c) Summary. Michelle, one of triplets, whose adjusted age is 10

months, was seen by physical, occupational, and speech therapists as part of a
multidisciplinary assessment (see Fig. 3–16). She was easily engaged and ap-
peared to enjoy the movement and interaction possibilities provided by the thera-
pists. Her parents were present during the assessment and provided information
about Michelle’s daily schedule, as well as their concerns regarding their infant’s
development.
Michelle exhibits decreased muscle tone in her neck and trunk. Increased
muscle tone is evident in all extremities and is more pronounced in the lower
limbs and throughout the right side. This atypical distribution of muscle tone
interferes with Michelle’s ability to isolate, initiate, sustain, and grade muscle
activity for the performance of age-appropriate gross, fine, and oral motor skills.
Secondary to the reduced muscle activity and paucity of active movement, Mi-
chelle demonstrates mild range-of-motion restrictions in the spine, shoulder gir-
dle, and upper and lower limbs, which also impacts on the development of inde-
pendent motor skills.
Assessment and Treatment Planning 235

Figure 3 Stroller: Michelle was brought to the assessment by her parents and arrived
in this stroller, which allows a position of posterior pelvic tilting, thoracic spine flexion,
and cervical spine hyperextension. Her legs are extended and feet plantarflexed.

Figure 4 Long sit: Placed in long sitting, Michelle sits with a posterior pelvic tilt, which
results in thoracic flexion and cervical hyperextension. Michelle has scapular abduction
and shoulder internal rotation that may be a result of the position of the pelvis and spine
position and may also be indicative of possible tightness in the muscle groups around the
shoulder girdle. Her legs are abducted and flexed, allowing a wide base of support to
sustain sitting balance. Her knees are somewhat flexed, which may indicate decreased
hamstring range of motion. Plantarflexion and eversion are visible at the ankle joint and
may be indicative of gastrocsoleus and peroneal muscle tightness.
236 Girolami et al.

Figure 5 Sit with reach: Posture is similar to that in Figure 2, but, with overhead reach-
ing, increased shoulder elevation, shoulder internal rotation, and poor scapulo-humeral
dissociation are apparent. These postures limit the range and variability of her reach. The
trunk muscles are inactive, and this muscle inactivity contributes to poor ribcage mobility.
Michelle shows little variety in her facial expressions and consistently maintains an open-
mouth posture.

Figure 6 Sit/grasp: The base of support is widened by increasing hip abduction and
knee flexion; this base is used to maintain sitting balance for fine motor tasks. This wide
base of support increases the posterior pelvic tilting to balance the forward movement of
the upper trunk for reaching tasks. The fisting in the right hand, seen in other positions,
increases with use of the left hand for fine motor grasping tasks. The left hand shows an
immature gross grasp when reaching for a small piece of cereal. Michelle’s poor ability
to grade her facial musculature is evident in the change of facial expression seen in this
figure. Her previously low-tone affect (Fig. 2) changes dramatically to a more high-tone
grimacing expression. This impacts on her ability to develop oral facial muscle strength
and interferes with her ability to develop rotary chewing.
Assessment and Treatment Planning 237

Figure 7 Supine/extended legs: Supine is Michelle’s preferred position for play. She
pushes back into the support surface with cervical hyperextension and strong lower ex-
tremity extension and toe clawing. This posture interferes with downward visual gaze and
Michelle’s ability to bring her hands to midline. Belly breathing, although appropriate for
age, is shallow and irregular.

(d) Recommendations. Physical therapy—twice weekly, to address lim-

itations that interfere with mobility and the acquisition of age-appropriate gross
motor skills; occupational therapy—twice weekly to address limitations in ability
to reach and grasp objects and use upper extremities for weight bearing and transi-
tions; and speech therapy—once weekly to address feeding, respiration, and pho-
nation concerns.

Figure 8 Supine/flexed legs: Michelle demonstrates the ability to alter her upper and
lower extremity posture, but lacks variety in her movements and alternates between flexion
and extension postures. Regardless of her ability to bring her arms to midline, she remains
unable to achieve eye hand/foot integration.
238 Girolami et al.

Figure 9 Rolling to side: Michelle is able to independently roll to either side, but uses
neck, trunk, and hip flexion to initiate the transition. She is unable to dissociate lower
extremities and exhibits no lateral head or trunk righting.

(e) Goals. The recommendations for frequency of treatment and the

discipline-specific functional goals are recorded on the Initial Treatment Plan
(see Fig. 2).

C. Initial Treatment Plan

The information regarding the frequency of therapy, as well information about
the providing therapists, is recorded in the initial treatment plan. The discipline-

Figure 10 Prone/flexed elbow: Michelle can independently achieve prone on forearms.

She uses excessive neck, trunk, and LE extension to sustain this posture. This interferes
with weight shifting and the development of trunk and shoulder girdle strength and control,
as well as lower extremity dissociation. It also limits scapulo-humeral range of motion,
lower arm and hand development, and eye–hand coordination.
Assessment and Treatment Planning 239

Figure 11 Prone/reach: Michelle uses increased cervical and lumbar extension to initi-
ate weight shifting. This interferes with elongation of the dorsal spinal musculature, activa-
tion of the abdominal muscles, and pelvic mobility. Trunk and shoulder girdle weakness
causes inefficient weight shifting for reaching, and Michelle collapses onto the weight-
bearing arm. This inability to sustain weight and to push up onto extended arms impacts
on the development of supination and elbow, wrist, and finger control.

Figure 12 Standing/front view: When placed in standing, Michelle uses strong exten-
sion in the hips, knees, and ankles to sustain weight bearing. Her arms are held close to
the body to assist with antigravity postural control. The strong activation of antigravity
muscles limits the initiation of movement and interferes with the ability to develop concen-
tric and eccentric muscle control.
240 Girolami et al.

Figure 13 Standing/side view: From the side, the effect of the strong lower extremity
extension can be better observed. This posture forces Michelle’s center of mass behind
her base of support and interferes with the development of independent standing balance.
Cervical spine hyperextension contributes to tongue protrusion and jaw instability.

Figure 14 Standing/table: The anterior support provided by the activity table allows
Michelle to achieve improved LE weight bearing. On the left side she is able to maintain
her foot under her center of mass and demonstrates some ability to balance knee flexion/
extension. The right foot remains strongly extended at the knee and ankle, with no ability
to initiate movement.
Assessment and Treatment Planning 241

Figure 15 Vertical suspension: When held vertical and tilted, Michelle is unable to
integrate lateral head and trunk righting and hip abduction to sustain antigravity postural
stability. Instead, extensor muscle activity is greatly exaggerated and she uses neck flexion,
shoulder elevation, and protraction. Michelle uses her hands to grasp her diaper, another
attempt to stabilize her body in space.

Figure 16 Protective extension: When tipped forward to elicit protective extension,

Michelle again reverts to the exaggerated lower extremity extensor muscle activity, along
with neck flexion, shoulder elevation, and protraction. She is unable to dissociate her arms
from her upper body to achieve a protective response.
 242
Girolami et al.
Figure 17 Speech treatment planning worksheet.
 Assessment and Treatment Planning
243
Figure 18 Occupational treatment planning worksheet.
 244
Girolami et al.
Figure 19 Physical therapy treatment planning worksheet.
Assessment and Treatment Planning 245

Figure 20 Michelle is placed in a flexed sitting position, inhibiting abnormal extension

of the body. Symmetrical head and neck elongation is maintained. The therapist inhibits
shoulder elevation and internal rotation, humeral extension. This promotes expansion of
upper chest. An ‘‘upright’’ bottle is used to maintain a forward gravity posture of the
tongue for sucking and effective swallowing pattern.

Figure 21 Michelle is placed in a high chair seat with an abductor between her legs
to encourage an upright sitting position. Two small rolls are placed behind her shoulders
to inhibit retraction and extension of the shoulders. Once Michelle is actively using a
‘‘chin tuck’’ head posture with a stable jaw, the spoon is placed on the lower lip in a
horizontal position. Michelle is encouraged to suck the food off the spoon with her upper
lip. The therapist continues to integrate lip closure skills and jaw stability.
246 Girolami et al.

Figure 22 In order to promote full integration of skills previously discussed, Michelle

is placed in her mother’s lap. Mother is inhibiting external rotation of shoulders, while
Michelle is independently placing small pieces of cereal in the lateral portion of the bucal
area of the mouth. Michelle is demonstrating a dynamic use of capital head flexion, jaw
stability, lip closure, and little overflow of spasticity in extremities. She is also maintaining
regular respiratory pattern during eating.

Figure 23 This position focuses on elongation of scapulo-humeral and lateral trunk

muscles. The ball provides a mobile surface to use the infant’s body weight shifting over
laterally and back to midline. Gentle traction through the upper extremity is applied. This
gradually increases humeral external rotation and flexion, elbow extension, and supination,
elongating muscles throughout the upper extremity. The therapist uses her other hand to
dissociate the lower extremities and inhibit the hip extension/adduction pattern to allow
for greater elongation and activation through the trunk.
Assessment and Treatment Planning 247

Figure 24 From the elongation of muscles in Figure 23, we now progress to increase
activation of trunk and shoulder girdle in this sidelying position with forward reach. The
therapist’s hands assist to maintain alignment and elongation through the trunk and shoul-
der girdle, while also assisting with weight shifting in the frontal plane. The therapist
watches for Michelle to activate lateral head lifting and reaching with the opposite upper
extremity. Again, the therapist’s front hand is also positioned to dissociate the lower ex-
tremities and inhibit increased muscle tone. Mom is an ideal ‘‘sticker board’’ to entice
Michelle to reach and weight shift forward toward midline.

Figure 25 Michelle pushes onto extended arm weight bearing, requiring increased elon-
gation on the weight-bearing side as well as increased humeral extension. Activation of
wrist and finger extensors is possible. Depression of the less-weighted humerus assists
Michelle in midline orientation of her head and beginning activation of shoulder de-
pressors, giving her ‘‘more neck.’’ This series shown in Figures 23–25 should be repeated
to both sides.
248 Girolami et al.

Figure 26 Michelle is now sitting on the ball with the therapist’s hand assisting in
alignment and weight shifting of the trunk over the pelvis in the frontal plane. The therapist
uses her forearms to maintain abduction and neutral rotation of the lower extremities to
enhance trunk activity. Michelle reaches up and out with one arm as the therapist uses
her index finger to inhibit excessive scapula movement. The other extremity is inhibited
by the therapist in a position of humeral external rotation and depression. This assists in
trunk alignment and stability as well as upper extremity dissociation. Michelle begins to
experience an erect trunk with arms free to reach out in space. This should be repeated
on both sides.

Figure 27 Michelle is combining trunk extension with forward reach of right hand,
while also beginning to weigh bear on left arm. The therapist controls the left humeral
alignment in neutral rotation and elbow extension as well as trunk extension. This requires
a subtle lateral weight shift toward the left hip. The weight shift and reaching activity
from Michelle also activates scapula depression and scapula trunk musculature as well as
elbow, wrist, and finger extension. This should be repeated to both sides.
Assessment and Treatment Planning 249

Figure 28 With further weight shift to the left side, Michelle is now reaching out of
her base of support, which is preparatory for transitions. This activity also increases the
demands throughout the muscles of the left scapula, shoulder, and lower arm and hand.
Mom is directing Michelle’s vision and reach of the right arm forward and across midline
with her head in a neutral position. This placement assists in actively lengthening the
cervical extensors and shoulder elevators.

Figure 29 Here is another position to combine trunk extension with active shoulder
flexion and elbow extension in the arms. This time Michelle is reaching bilaterally to the
therapist’s leg, which serves as a surface that encourages wrist extension. Michelle is
moving her extended trunk over the pelvis anteriorly with beginning weight through the
lower extremities and feet.
 250 Girolami et al.

(a) (b)

Figure 30 These two photos demonstrate Michelle freeing both hands in midline while
supported in sitting on the therapist’s lap. It is important for Michelle to experience more
upright positioning while using both hands to reach and explore objects. The therapist’s
hands encourage alignment of the humerus in neutral rotation and depression from Mi-
chelle’s lower arm using slight downward traction. The therapist is also assisting forearm
rotation to maximize visual motor exploration of the object (a). In (b), the therapist uses
even less assist to align upper trunk and arm by minimally adducting Michelle’s shoulder.
Michelle is able to control her alignment and activate appropriate head, trunk, and shoulder
muscles on her own. The therapist assists in stabilizing the toy in Michelle’s hand for
increased wrist extension, as Michelle is not able to shape her right hand around this
object independently yet. The pelvis is slightly posteriorly tilted in these activities because
Michelle is still unable to incorporate full trunk extension with bilateral fine motor tasks.
However, visual motor and upper body control are improved. Future sessions should con-
tinue to link bilateral hand and visual motor function with erect floor or bench sitting.

specific goals are also included on the form and these goals will provide a baseline
to measure progress and achievement of the identified functional outcomes.
The initial treatment plan should be developed and discussed with the fam-
ily. The plan may need to be modified to accommodate the family’s priorities
and resources. The Initial Treatment Plan created for Michelle can be found in
Figure 2.
Assessment and Treatment Planning 251

Figure 31 This photo illustrates a possibility for Michelle to experience both arms free
for play in a stable, upright sitting position. Here, gravity will assist Michelle in shoulder
depression, as well as support to the trunk and pelvis. The tray provides a surface for
Michelle to get experience with age-appropriate tabletop visual motor tasks. This will
assist in the development of reach with a more erect trunk, but also further the development
of hand function and independent play. As independent sitting and reaching improve, the
chair would no longer be necessary.

1. Treatment Planning Worksheet

After developing the Initial Treatment Plan, each therapist must then develop a
discipline-specific intervention protocol. The Treatment Planning Worksheet is
a tool for the therapist to use in completing this aspect of the intervention process.
Ideally, a separate Treatment Planning Worksheet is filled in for each goal. The
therapist then identifies and prioritizes the impairments associated with each goal
and develops a sequence of treatment strategies to address the impairments. These
strategies are intended to assist the infant to eventually achieve the identified
functional goals.
Next to each treatment strategy is a space to describe the intended outcome
of each intervention. After each session, the therapist can also use this worksheet
to document effectiveness of the strategies or revisions that should be made prior
to the next treatment session. Figure 17 to 19 provide examples of this process
using one of the speech (Fig. 17), occupational (Fig. 18), and physical (Fig. 19)
therapy goals written for Michelle. In addition, Figures 20–46 show discipline-
252 Girolami et al.

(a) (b)

Figure 32 Therapy begins with two activities to alter Michelle’s extended lower ex-
tremity posture and to lengthen the hip adductors, internal rotators, and hamstrings. These
supine activities also encourage elongation of the cervical extensors, and with side-to-side
weight shifting improve activation of the muscles around the trunk. Michelle enjoys this
position and begins to interact with the therapist, reaching out to grasp a toy.

Figure 33 With increased mobility, activities in sitting are used to continue anterior-
posterior pelvic mobility and add lateral weight shifting to increase activation of muscles
in the trunk and pelvis. These sitting activities are combined with preparation of the right
upper extremity for weight bearing. While maintaining the infant’s shoulder and arm in
a position of shoulder depression, forward flexion, and external rotation, along with elbow
and wrist extension, this activity uses joint compression and deep pressure to improve
sensory awareness and increase muscle length and muscle activity in the upper extremities.
Assessment and Treatment Planning 253

Figure 34 Following preparation of the trunk and upper extremities, we observe im-
proved trunk and pelvic mobility and decreased shoulder elevation. The lower extremity
extensor pattern has also decreased with the improved trunk and pelvic position and in-
creased muscle activity in the trunk. Play activities are introduced to elicit active trunk
rotation and forward reaching.

Figure 35 To build on previous trunk mobility and upper extremity preparation for
weight bearing, a side sitting position is used to add the additional component of lower
extremity dissociation. Here, we see interest in reaching with the more involved right
upper extremity, while maintaining a position of good left upper extremity weight bearing
and lower extremity dissociation.
254 Girolami et al.

Figure 36 By assisting Michelle to shift her weight forward, the transition to bilateral
upper extremity weight bearing can be made. This increases muscle activity in the shoulder
girdle, trunk, and pelvis by encouraging weight shifting and reaching in various planes.
This position can also be used to improve range of motion of the hip flexors.

specific treatment sequences for the goals identified on the three Treatment Plan-
ning Worksheets.

2. Treatment Strategies
Once the sequence of treatment strategies for each goal has been identified, a
Treatment Strategy Worksheet should be developed for each strategy. This work-
sheet is designed to assist the therapist in considering all the elements necessary
to produce treatment strategy. These elements reflect considerations relevant to
the infant, the therapist, and the environment. Using this worksheet permits the

Figure 37 In this sequence (see Figs. 38 and 39), we are ready to challenge the motor
activity achieved earlier in treatment in a more antigravity position. First, improved hip
external rotation and ankle dorsiflexion range of motion must be achieved.
Assessment and Treatment Planning 255

Figure 38 Michelle is assisted into a position of upper extremity weight bearing with
increased hip external rotation and ankle dorsiflexion. Improved range of motion and mus-
cle activity in the hip and ankle are facilitated by guiding weight shifting in various planes.
Joint compression is applied to enhance proprioceptive awareness and increased weight
bearing in the lower limb and foot.

Figure 39 Using play to motivate a forward weight shift, Michelle is able to achieve
a position of bilateral upper extremity weight bearing and lower extremity hip dissociation
and weight bearing on the left foot. To enhance muscle activity, Michelle should be guided
through and encouraged to initiate weight shifting. Side-to-side weight shifting will im-
prove muscle activity around the shoulder girdle and increase hip abduction in both hips,
as well as hip external rotation and ankle dorsiflexion in the leg that is weight bearing
through the foot.
256 Girolami et al.

Figure 40 Moving to a sitting position, it is possible to continue to provide weight

bearing and improve range of motion in the lower extremities. It is easier to control the
weight bearing when one foot is prepared at a time. We also see decreased shoulder eleva-
tion and improved spinal extension, secondary to the modified four-point activities prac-
ticed earlier.

Figure 41 After weight bearing and range of motion have been prepared in the feet
and ankles, it is combined with activities to improve pelvic mobility and forward weight
shifting in preparation for standing. Here, Michelle’s pelvis is maintained in forward
flexion, but a toy is used to motivate her to shift her weight forward. This enhances activa-
tion of the lower extremity muscles in a more flexed pattern that will allow Michelle to
eventually achieve a standing posture without pushing back into extension, her pattern of
choice.
Assessment and Treatment Planning 257

Figure 42 With this motivation to weight shift forward, Michelle is able to achieve a
bear-standing posture. This reinforces the upper extremity weight bearing and combines
this with work in the shoulder girdle, trunk, and lower extremities. You will note that her
feet are strongly ‘‘pushing’’ (increased plantarflexor activity) into the support surface for
stability. Since her range of motion has been prepared, this posturing is indicative of her
instability in this position. This demonstrates a common strategy, which we all may use
in novel situations (i.e., stiffening joints to decrease the amount of available movement).
For treatment purposes, this posture can be used as a benchmark. As Michelle’s lower
extremity strength and ability to control and activate lower extremity muscle groups im-
proves the toe clawing and overactivity of the plantarflexors will decrease.

Figure 43 To decrease the overactivity in the plantarflexors, Michelle must be provided

with other means to achieve and sustain her postural stability. This can often be achieved
by facilitating movement. As Michelle reaches forward, the weight shift requires more
activation of muscle activity in the shoulder girdle, trunk, and lower extremities. For the
treating therapist, it is often easier insure optimal weight bearing and to guide the
eccentric/concentric muscle activity at the hip, knee, and ankle by working with one lower
extremity at a time. This also reinforces the hip dissociation and assists Michelle in realiz-
ing that her lower extremities can work independently of each other.
258 Girolami et al.

Figure 44 Moving into standing and using a mobile support surface, Michelle must
continue to anticipate and plan new strategies to sustain the antigravity posture. She ap-
pears relaxed and enjoys rocking the bench while standing. Again you will note the ten-
dency to revert to the increased plantarflexor activity indicative of the need for continued
practice in this position.

Figure 45 Once again, the treatment strategy of lower extremity dissociation is em-
ployed. This increases Michelle’s awareness that her lower extremities can initiate and
sustain different muscle activities and must not always function as a unit. Additionally,
this posture can be used to increase hip flexor and plantarflexor range of motion in the
extended (left) lower extremity, while encouraging muscle grading and control in the for-
ward, flexed lower extremity.
Assessment and Treatment Planning 259

Figure 46 In this last photo, Michelle is given the opportunity to practice the skills
that have been worked on in speech, occupational, and physical therapy. Following her
therapy, Michelle is able to sit independently while playing with a toy. We observe im-
proved sitting posture with good cervical flexion, mouth closure, decreased shoulder eleva-
tion, and the ability to sustain a position of lower extremity hip and knee flexion while
using the upper extremities to reach forward for the toy. It is extremely important to pro-
vide these play opportunities to allow Michelle to practice and incorporate new skills and
improve her body awareness.

therapist to analyze the success of each strategy and systematically determine

which aspects to alter in order to improve the intervention and achieve the desired
functional outcomes.
Figures 47–49 are examples of three discipline-specific treatment strate-
gies. Each figure illustrates this process for one of the identified strategies listed
on the Treatment Planning Worksheets.
Over time, the novice therapist will develop a repertoire of intervention
strategies that can be applied with some modifications for infants with similar
impairments and identified functional outcomes. Eventually, with experience, the
therapist will be able to perform this process with minimal effort.

D. Charting Progress
The daily and progress note templates in Chapter 8 could be used to chart infor-
mation related to Michelle’s daily treatments and progress over time. Since this
case study represents a single multidisciplinary assessment and one treatment
session, these forms are not included in this chapter.
260 Girolami et al.
 Assessment and Treatment Planning
Figure 47 Speech therapy treatment strategy worksheet. Goal: Michelle will be spoonfed in 15 mins, while maintaining proper
postural alignment.

261
 262
Girolami et al.
Figure 48 Occupational therapy treatment strategy worksheet. Goal: Michelle will reach overhead for a toy with either hand
while independently floor sitting.
 Assessment and Treatment Planning
263
Figure 49 Physical therapy treatment strategy worksheet. Goal: Michelle will independently stand to play at a small table.
 264
Girolami et al.
Figure 49 Continued.
Assessment and Treatment Planning 265
Continued.
Figure 49
266 Girolami et al.

E. Summary
This case study demonstrates the assessment and treatment planning process de-
tailed in Chapters 6 to 8. Templates have been provided to guide the therapist
through the thought process of organizing and analyzing the assessment data and
developing a sequence of intervention strategies based on the identified impair-
ments and goals.
Michelle continues to receive physical and occupational therapy twice a
week and speech therapy once a week. She has made progress toward all of her
identified goals and her treating therapists continue to use this assessment and
treatment planning process to chart progress and update goals and intervention
strategies. Michelle is an excellent example of the effectiveness of early identifi-
cation and intervention, and of how careful assessment and treatment planning
can improve the functional outcome for children with cerebral palsy.
10
Research in Cerebral Palsy
Yesterday and Today

Charlene Butler
Health and Special Education Consultant, Seattle, Washington

As we learned in the first chapter of this book, only 50 years ago there was little
understanding of, or attention to, cerebral palsy in the United States. It was in
1947 that a group of six physicians met in Chicago to promote academic and
scientific discourse on cerebral palsy by forming the organization that eventually
became the American Academy for Cerebral Palsy and Developmental Medicine
(AACPDM). These six men from different medical backgrounds—neurology,
neurosurgery, pediatrics, orthopedic surgery, and physical medicine—recognized
the importance of pooling resources and ideas from their respective fields. With
that far-reaching mindset, they laid the groundwork for an important model of
interdisciplinary collaboration that eventually expanded to include physical, oc-
cupational and speech therapy, special education, psychology, and bioengineer-
ing—and grew to include a significant international membership.
Almost immediately, the formation of the AACPDM led to an on going
emergence of new ideas about treatment. These ideas arose from the increasing
involvement of clinicians in the many disciplines who became interested in mov-
ing the field forward by exploring new methods that might enhance the quality
of life for children with cerebral palsy. Applying their evolving understanding
of physiological and developmental processes, they formulated innovative ap-
proaches to the treatment and management of this complex disorder.

I. EVOLUTION OF TREATMENTS

A wide variety of approaches were proposed and pursued by the different special-
ists without validation by scientific investigation. In the rush to be helpful, there
267
268 Butler

was a tendency to want to believe in and adopt recent treatments. These new ideas
were promoted by well-intentioned practitioners and often appeared to make a
lot of sense, based on the current understanding of physiology and developmental
theory. Many of these ideas were based on medical treatments that had been
successful in other conditions, such as polio. Some were new approaches, often
named for their originators (e.g., Bobath, Rood, Vojta, Doman-Delacato), whose
charismatic personalities were instrumental in widespread acceptance of un-
proven therapies. Other approaches employed adaptive equipment and, later, as-
sistive technology.
The thrust of intervention changed as time went by. Late diagnosis and
intervention of a predominantly orthopedic nature (i.e., surgery and bracing) gave
way to early identification and early intervention programs of a multidisciplinary
nature but with an educational orientation.
By the 1960s, the neuromaturational theory of development was guiding
assumptions made about motor development and control, as well as proposed
interventions (1). Neurodevelopmental therapy (also known as NDT and the Bo-
bath method) derived from this neuromaturational perspective and has dominated
physical, occupational, and speech therapies (2). Other predominant approaches,
based on this perspective, include Rood’s sensorimotor approach, proprioceptive
neuromuscular facilitation (PNF), and Ayres’ sensory integration (SI) therapy.
These interventions attempted to promote typical developmental progressions and
to inhibit abnormal reflexes, tone, and movement patterns.
More recently, neuromaturational principles are being reexamined in the
light of contemporary systems theories (3). Dynamic systems theory, for exam-
ple, is being advanced as an alternative way to explain and describe child develop-
ment and has begun to influence therapeutic evaluation and treatment. Instead of
viewing motor development as the unfolding of prescribed patterns in the central
nervous system, the central nervous system is seen as only one component of
motor development and control. Organization of motor control depends on the
interactive relationships among child, task, and environmental variables. Assess-
ments of tasks and environments, therefore, are as important as assessments of
the child. Interventions occur within the context of functional activities and may
focus on the child, task, or environment. Treatment principles emphasize age-
appropriate, goal-directed tasks; practice; transfer of learning; and timing of feed-
back.

II. ABSENCE OF SCIENTIFIC VALIDATION

Attention turned increasingly toward research; but circumstances led to relatively

little pursuit of treatment outcome studies. One obstacle was a general reluctance
to withhold any treatment that might help. This reluctance was coupled with little
Research in CP 269

demand from parents, third-party payers, or practitioners for hard evidence of

efficacy. Moreover, the rigorously controlled studies that are necessary to estab-
lish efficacy of an intervention are especially difficult to accomplish in this popu-
lation. As a consequence, researchers focused on other important questions about
the causes and incidence of cerebral palsy, prognosis, and diagnosis. These ques-
tions could be answered appropriately with analytical, correlational and other
types of studies that are more easily accomplished than controlled trials needed
for definitive answers about treatment outcomes. The efficacy studies that were
conducted tended to be anecdotal or descriptive in nature, without control groups,
and composed of small numbers of children. The larger group studies were ham-
pered by lack of clear definition of subjects within the general diagnosis of cere-
bral palsy and by the heterogeneity of subjects within the samples. Subjects with
varying degrees of severity and type of abnormal movement, other impairments
commonly associated with cerebral palsy, a range of cognitive ability, and age
span from infant to adult often comprise the sample of ‘‘cerebral palsy.’’ There
were also mechanical limitations of sorting and analyzing data in the years before
computer capability was widely available.
As a result of the reluctance to withhold treatment, the lack of demand for
scientific evidence of efficacy, and the relative difficulty of doing efficacy studies,
the value of treatment approaches in cerebral palsy through the years has been
more extolled than proven. Despite convincing scientific evidence of their effec-
tiveness—or lack thereof—some interventions became the standard of care while
others came to be regarded as ‘‘alternative’’ or ‘‘controversial.’’ Still others dis-
appeared altogether. Therefore, the issue of which treatments should be pursued
has been contentious between specialists who held opposing views, tempered
with varying degrees of skepticism. Parents, faced with conflicting recommenda-
tions, have had to pursue appropriate intervention through faith in their child’s
doctors, therapists, or teachers, rather than on the basis of scientific validation
of efficacy.

III. INCREASING INTEREST IN TREATMENT OUTCOMES

RESEARCH

By the mid-1980s, however, increased interest and focus on the importance of

scientific research about treatment outcomes began to be apparent. Clinicians
interested in moving the field forward pursued postgraduate training in research
methodology. The AACPDM began offering instructional courses in research
methodology to help clinicians understand the issues and problems in conducting
research and how to interpret the results of research studies. Papers selected for
presentation at the meetings of the academy were also required to reflect research
rather than ‘‘show and tell’’ about treatments being explored.
270 Butler

A scientifically cautious approach to the adoption of new treatments ap-

peared in meetings and publications. Practitioners were urged to temper their
enthusiasm for new theories or treatments until their efficacy could be subjected
to scientific scrutiny. For example, when selective dorsal rhizotomy, a new treat-
ment for reducing spasticity was reported in 1982, there was a sense of urgency
in the clinical and research community that it be validated before it became an
accepted practice (4). Investigation of selective dorsal rhizotomy was organized
and undertaken by a variety of different investigators as quickly as possible.

IV. EVIDENCE-BASED HEALTH CARE MOVEMENT

Health care, in general, has been undergoing a paradigm shift in recent years.
Coincident with this shift, research in the field of cerebral palsy has increasingly
focused on investigations of treatment outcomes. In the past, medical practice
has been primarily based on expert opinion supported by an understanding of
basic mechanisms of disease or physiology and on extensive, but uncontrolled,
clinical observations (5). The new paradigm is evidence-based practice. This is
the integration of clinical expertise with the best available clinical evidence from
systematic research (6). It is characterized by knowledge of treatment outcomes
based on research and on involving individual patient’s rights and preferences
in making clinical decisions about their health care.
Adults with disabilities and parents of children with disabilities, through
political advocacy, have transformed the potential of lives of people with disabili-
ties by bringing them into the mainstream of family and community life. People
with disabilities, therefore, need treatment programs that improve their ability to
participate in activities in normal settings. They have been increasingly vocal
that their medical care should target improved function.
Fiscal pressures are also fueling this paradigm shift in developmental medi-
cine. The abundance of resources in the United States and the western industrial
nations has created the circumstance that all interventions that might possibly
benefit a child have been implemented. Now, however, there is increasing de-
mand from politicians, economists, and payers to provide the ‘‘best’’ treatment
for the least amount of money. At the same time, developing countries, where
resources are extremely limited, are experiencing an increasing survival rate of
children with disabilities. Fledgling intervention programs for children with cere-
bral palsy are steadily emerging in all the developing countries. These programs
must judiciously allocate their meager resources to treatments that have been
shown to be the most effective in giving children with cerebral palsy an improved
quality of life.
Research in CP 271

V. PROBLEMS IN APPRAISAL OF THE TREATMENT

OUTCOMES LITERATURE

In response to the worldwide need for a critical and useful appraisal of the existing
scientific literature, the American Academy for Cerebral Palsy and Develop-
mental Medicine began efforts in 1995 to develop summaries of evidence about
interventions in developmental medicine (7). Immediately, however, stumbling
blocks appeared.
The multidisciplinary nature of developmental disabilities, in general, and
cerebral palsy, in particular, poses a challenge when it comes to evaluating out-
comes research. A simple review of the literature yields a hodgepodge of informa-
tion from the multiple disciplines that publish research in a wide variety of spe-
cialty journals. In addition, there is little consistency in what has been measured
and how it was measured. Physiologically concerned specialists have focused on
outcomes such as spasticity; therapeutically concerned specialists have investi-
gated outcomes related to gait, hand use, and speech; and developmentalists have
concentrated on outcomes such as social interactions, learning, or emotional well
being. These circumstances make it difficult to identify all the relevant studies,
to assess the efficacy of individual treatments, and to compare the outcomes of
one intervention with those of another.
Outcome measures, to date, have been determined almost exclusively by
health care professionals, not by the people who live with the treatments and
face the reality of the outcomes. Groups, such as the Advisory Board to the
National Center for Medical Rehabilitation Research, have made it clear that
people living with disabilities are concerned with outcomes that reduce their func-
tional limitations. They want to be able to perform more activities and increase
their participation in the normal societal roles. It is in these dimensions that people
experience their medical condition. Take, for example, the sometimes controver-
sial issue about whether the treatment of youngsters with cerebral palsy should
focus exclusively on interventions to develop eventual ambulation or whether it
should also allow the use of wheelchairs. A treatment plan that prioritizes even-
tual ambulation with interventions to reduce spasticity and facilitate normal
movement patterns offers an unknown potential to walk at some future time.
In the meantime, restricted mobility affects every aspect of the child’s life and
development. Alternatively, a treatment plan that involves a wheelchair makes
it possible to perform more of the roles of childhood that depend on mobility
immediately. A wheelchair can provide a self-controlled, easy, and timely means
of mobility to keep up with peers in various kinds of gross motor play, perform
household chores, and explore the neighborhood community. Only the people
who must live with the treatment decisions can evaluate whether the cost of
eventual ambulation of unknown quality or quantity may be worth while. These
272 Butler

costs must be counted in dollars, pain, time in intensive therapy in lieu of time
in other activities, orthotic use, and perhaps years of literally lagging behind peers
in participation of normal roles at home, school, and in the community due to
restricted mobility.
The lack of rigor in the efficacy studies that have been done poses another
challenge to evaluating outcomes research. Interventions supported only by bio-
logical theory, testimony, or common sense and uncontrolled observations have
been the norm in the treatment of cerebral palsy, as in medicine, in general.
The fact that a treatment idea is sensible, based on our current and imperfect
understanding of the physiology or epidemiology of cerebral palsy, is no guaran-
tee that the approach will make a clinical difference. It is important to know
whether decisions can be based on the results of rigorously controlled investiga-
tions or to know whether to be much more circumspect because a decision may
rest only on the results of uncontrolled observations—or even weaker evidence.

VI. A CONCEPTUAL FRAMEWORK FOR REVIEWING

TREATMENT OUTCOMES

To overcome these hurdles, review of outcomes research required a conceptual

framework for considering treatment outcomes. The framework needed to accom-
modate data from multiple disciplines, to make sense of the existing disparate
scientific findings, and to promote consensus about which treatments work (i.e.,
are efficacious) and which treatments matter to children and their families. After
deliberation of the merits of classification systems to accomplish this, the
AACPDM endorsed and implemented a two-part framework that makes it possi-
ble to (1) classify and consolidate diverse treatment outcomes in a meaningful
way and (2) indicate the strength of the evidence so readers can know with what
degree of confidence it can be used (8). This framework will structure the devel-
opment of evidence tables that are a convenient way to summarize what is known,
what is not yet known, and what it would be helpful to know about various
interventions.
The AACPDM framework will be used in the next chapter to explore the
existing evidence for several interventions for infants and young children with
cerebral palsy. An understanding of the basic concepts and definitions of the
framework is essential background for following the structure of the evidence
tables and the analyses they make possible. Readers who are already familiar
with this framework may want to skip the rest of this chapter. Readers who are
interested in detailed information about the framework, and how to use it, will
want to supplement the following information by reading the AACPDM Method-
Research in CP 273

ology for Developing Evidence Tables and Reviewing Treatment Outcomes Re-
search, which can be found on the Internet at www.aacpdm.org (9).

A. What Kind of Evidence Do We Have?

The first part of the AACPDM framework is a classification system of dis-
ablement that was used in Chapter 5 to discuss considerations in providing ther-
apy services. The NCMRR and the World Health Organization have identified
five dimensions of human functioning in which congenital abnormalities, devel-
opmental disorders, genetic conditions, injury, or disease and its consequences
may create medical and social disablement. This classification of disablement
was used again in Chapter 6 to discuss comprehensive clinical evaluation and
treatment planning. As we will see in Chapter 11, the classification can also be
used to aggregate research findings and to demonstrate the gaps in our knowledge
about outcomes. Even widely varying data can be consolidated and analyzed in
an evidence table constructed from these five dimensions. Table 1 summarizes
the five dimensions and Table 2 demonstrates how selected effects of cerebral
palsy may manifest in these dimensions.
An evidence table organized by these dimensions has an additional benefit
beyond accommodating diverse data. It lends itself to an examination of interac-
tions across dimensions that may occur as a result of an intervention. This is
important because there has been an underlying, but untested, assumption in treat-
ment of cerebral palsy that these are five ‘‘levels’’ of a hierarchical causal path-
way. In a hierarchical perspective, periventricular leukomalacia causes spasticity,
which is responsible for awkward gait, which leads to restricted participation in
community activities. While this may be true, the corollary, that successful treat-

Table 1 Five Dimensions of Human Functioning

Dimensions Description

Pathophysiology Interruption or interference of normal physiology and devel-

opmental processes or structures
Impairment Loss or abnormality of body structure or physiological body
function
Functional limitation/ Restriction of ability to perform functional activities
activity
Disability/participation Restricted participation in typical societal roles
Societal limitation/ Barriers to full participation imposed by societal attitudes, ar-
contextual factors chitectural barriers, and social policies and other external
factors
274 Butler

Table 2 Examples of Variety of Effects of Cerebral Palsy on Dimensions of Human

Functioning

Dimension Examples

Pathophysiology Cystic lesions and white matter loss as a result of periventric-

ular leukomalacia of the premature infant’s brain
Impairment Spasticity, contractures, low endurance, perceptual dysfunc-
tion
Functional Limitation/ Awkward walking with fatigue; difficulty dressing; poor con-
activity centrating and sustained listening; reading problems
Disability/participation Education in restricted environment, limited sports access,
lack of dating opportunity, lack of contribution to family
by doing fair share of chores, not able to attend commu-
nion at church, unable to achieve independent living
Societal limitation/ Exclusion from school/city team sports, denial of medical
contextual factors treatment or equipment by insurer, government apathy to-
ward the provision of low-income independent living units
for people with disabilities, failure of voters to support
transportation bond for wheelchair lifts on public buses

ment at one ‘‘level’’ (i.e., the impairment dimension) will automatically and posi-
tively affect another ‘‘level’’ (i.e., functional limitation) has not been confirmed
by scientific observation.
The assumption of a hierarchy has had two effects on research efforts.
For example, in the area of spasticity management, the assumption that reducing
spasticity will automatically yield positive outcomes in function and social roles
has prioritized our interventions toward those that alter spasticity. In addition,
investigators have generally not measured treatment effects on function and dis-
ability, but have restricted their measures to effects on spasticity.
These five dimensions may prove to be multidirectional, not hierarchical,
with complex interactions; in other words, effects may be top-down, bottom-up,
or lateral. For example, antispasticity drugs may intervene in the pathophysiologi-
cal dimension by affecting neurotransmitters; orthopedic surgery may act in the
impairment dimension by changing range of motion. There may be positive, nega-
tive, or no effects of these drug or surgical interventions in the dimensions of
functional limitation and disability. Assistive technology, such as powered mobil-
ity, may compensate for functional limitations by providing an alternative means
of efficient locomotion. It may decrease disability by allowing a student to be
independent and to move about school faster and with less effort. Its use may
or may not have positive or negative effects in the impairment dimension, such
as improved head control (positive), skin breakdown (negative), or increased knee
Research in CP 275

contractures (negative).Use of assistive technology may have effects in the func-

tional limitation dimension, through loss of ability for independent transfers, or
conversely, increase of transfer ability due to high motivation and effort to access
public transportation. Training for the Wheelchair Olympics may increase ability.
It may or may not also decrease emotional impairment for a person with depres-
sion or low self-esteem. The relationships among the five dimensions of function-
ing have not been, but need to be, systematically investigated.

B. How Credible Is the Evidence We Have?

It is important to know whether health care decisions (especially those involving
high risk to people) can be based on the results of rigorously controlled investiga-
tions or that they can rest only on the results of uncontrolled clinical observa-
tions—or even lesser evidence. Potentially useful interventions in health care
originate with a common sense idea, or with expectations that are based on knowl-
edge of the pathophysiology of a medical condition and the mechanism of action
of an intervention. Sometimes they are based on beliefs arising from unsubstanti-
ated theories of physiology or from analogies to other conditions. These forms
of evidence may constitute the sole basis for an intervention that is being offered.
Usually, however, these types of evidence serve only in a preliminary way, until
the intervention has been submitted to systematic observation and evalua-
tion.While the foregoing types of evidence can have a compelling logic, the actual
effectiveness of an intervention can only be established by external evidence
derived through empirical research.

1. AACPDM Classification of Levels of Evidence

Table 3 shows the AACPDM levels of evidence, which classify empirical and
nonempirical evidence on the basis of its internal validity or credibility.
As a rule of thumb, level I designs are well-controlled experiments that
must also include random allocation and manipulation of the intervention. Level
II designs do not include randomization, but are otherwise well controlled experi-
ments or comparison studies. Level III designs are comparison studies, but one
(or both) of the comparisons is retrospective. Levels I to III all include some
control group or condition, the purpose of which is to establish an expectancy
about the outcome in people in the absence of intervention. Level IV designs
have no comparison group or condition. If there is a firm base of expectancy
(i.e., all people with a certain condition previously died within 1 year of diagno-
sis), then a control is not needed to demonstrate convincing evidence for an inter-
vention. For most conditions, however, we lack good descriptive information
(natural history of conditions) or baseline information, so an expectancy about
outcome is necessary to establish convincing evidence about an intervention.
 276
Table 3 AACPDM Classification of Levels of Evidence

Level Nonempirical Group research Outcomes research Single subject research

I Randomized controlled N-of-1 randomized con-

trial trolled trial
All or none case series
II Nonrandomized controlled Outcomes research ABABA design
trial analytic survey Alternating treatments
Cohort study with concur- Multiple baseline
rent control group across subjects
III Case-control study ABA design
Cohort study with histori-
cal control group
IV Case series without con- AB design
trol group
V Case reports
Anecdotes
Expert opinion
without explicit crit-
ical appraisal (or
testimony)
Theory based on
physiology, bench,
animal research
Common sense/first
principles

Butler
Any study which is not well controlled is downgraded to the next lower level.
Research in CP 277

Level V evidence is nonempirical evidence—or level IV case series with high

potential for bias reducing the information more to the equivalency of case reports
at level V. Level V evidence can only hint at possible relationships between
intervention and outcome. Any research design that is not well controlled is
downgraded to the next lower level.

2. Definitions of Research Types

Because there is no standard taxonomy for discussion of research concepts and
designs, even within the field of medicine, the following definitions are given
for the terms used in the classification. Some variations of these designs are
included; others may be encountered in the literature.
(a) Randomized Controlled Trials. The distinguishing feature of the
randomized controlled trial (RCT), in group research, is that people are randomly
allocated to a group that is offered the intervention or a group that is offered
nothing, ‘‘usual care,’’ a placebo, or some other intervention. When groups are
relatively small, strategies in addition to random allocation may be used to in-
crease the similarity of the groups. Strategies such as matching and stratification
by age or disability, for example, will precede random allocation; statistical strat-
egies such as analysis of covariance will follow completion of data collection.
Variations of the RCT include the randomized crossover trial. This is a
RCT with the added feature of internal comparison of people against themselves
as well as external comparison of the groups. People are randomly allocated to
an intervention and control group and receive the intervention or control condi-
tion for a specified period of time, as in the RCT. Then the groups cross over
(i.e., the group that received the treatment initially now receives the control condi-
tion and vice versa).
(b) All or None Case Series. Not all certain knowledge is obtained
through controlled experiments. Experiments are necessary only when our expec-
tation of an outcome is not certain. If an outcome is essentially certain, such as
a uniformly fatal disease, a case series in which one or more people survive after
receiving an intervention provides very convincing evidence. Criteria for the all
or none case series are met when all people died before the treatment became
available, but some now survive on it; or when some people died before the
treatment became available, but none now die on it. Another example of an all
or none case series are outcomes that can only occur as a result of the intervention
such as operative mortality and perioperative risks.
(c) N-of-1 Randomized Controlled Trials. In single subject research,
treatment versus control conditions are manipulated within a single person; the
order of these exposures is randomly allocated. There are several variations of
the N-of-1 RCT, sometimes called a randomized crossover trial; these include
278 Butler

the blind crossover trial or double-blind crossover trial. A person frequently un-
dergoes pairs of periods in which one period applies an experimental treatment
(B) and the other applies a placebo or baseline (A)—in other words, an ABABA
type of design.
The order of these two periods within each pair is randomly selected so
that the conduct of the trial may be, for example, ABBAAB. Treatment outcomes
are monitored to document the effect of the treatment currently being applied.
Pairs of treatments are repeatedly measured until the person being treated and
the investigator are convinced that the treatment period is clearly different, or
clearly not different. In a blind trial, the person making the outcome assessments
is blind to the treatment condition; in a double-blind trial, both the subject and
the assessor are unaware of the treatment condition. Although this method can
also provide a group comparison when more than one subject has been studied,
the focus of the published report is the individual comparisons. Alternatively,
when multiple N-of-1 randomized controlled trials conducted under the same
protocol have been summed and a group comparison is provided, this is called
a multiple crossover trial.
Another variation of the N-of-1 RCT is the alternating treatment design in
which the subject is exposed to the treatment condition and control condition(s)
in close temporal proximity. For example, a subject is assessed during a 20-
minute exposure to a control condition followed by a 20-minute exposure to the
treatment condition; these exposures are determined by random allocation. Yet
another variation is the multiple baseline across subjects design; several subjects
are assessed for differing periods of exposure to the nontreatment condition
(called baseline) and then assessed during treatment exposure. The order in which
subjects change from the control condition to the treatment condition is estab-
lished through random allocation.
(d) Nonrandomized Controlled Trials. This is like a RCT with one ex-
ception: subjects are not randomly allocated to groups. Instead, the groups are
convened on the basis of factors such as convenience (e.g., a comparison of peo-
ple in two regional hospitals), availability (children who attend the investigator’s
clinic), or voluntary behavior of the subjects. A variation is the crossover design
without randomization. Similarly, the absence of random allocation of treatment
and control conditions to a single subject makes the alternating treatment design
and multiple baseline across subjects design the single subject research equivalent
of this experimental design, as does the ABABA design. Multiple observations
of potential change between treatment and control phases are possible.
(e) Cohort Study with Concurrent Control Group. This study is essen-
tially the same as the nonrandomized controlled trial.
(f ) Outcomes Research Analytic Survey. This is not a direct study of
people. Instead, ‘‘groups’’ are created from retrospective review of information
obtained from a database. This is sometimes called a correlational study. De-
Research in CP 279

pending on the criteria used for inclusion in a database, the observations might
be controlled and calibrated. The database can be on a large scale (e.g., national
surveillance registry for spina bifida) or a small scale (e.g., the spina bifida clinic
of a hospital). In outcomes research, the investigator starts with an intervention
of interest, sorting all the people in the database in rows, according to whether
they received the intervention or not, and then sorting them in columns, according
to whether they had the outcome of interest or not. As an example, the investigator
uses a database that was created by a hospital’s neuromuscular clinic to follow
up its patients with cerebral palsy. Data can be extracted that allow the following
question to be answered: Are children with spastic diplegia cerebral palsy who
received selective posterior rhizotomy (SPR) surgery more likely to walk unaided
at age 10 than children who did not? The investigator organizes the numbers
obtained as indicated in Table 4.
The numbers in cells a,b,c, and d are analyzed for differences in rates of
outcomes. A major value of this design is that it demonstrates whether the out-
comes we might expect to observe (or have observed) in controlled experiments
are also being observed in the real world of clinical care.
(g) Case-Control Study. Like the outcomes research analytic survey,
this, too, is a correlational study of ‘‘groups’’ created by retrospective review of
information for analysis. In this correlational analysis, not all people who receive
an intervention are tracked, only those with a particular outcome. Similarity of
people with an outcome of interest (cases) to people without the outcome (con-
trols) can only be established retrospectively; and their previous exposure to an
intervention of interest can only be verified retrospectively. In the most common
form of this design (called a 2 ⫻ 2 case-control study), the investigator starts by
identifying a group of people who already have an outcome of interest (called
cases) and another group of similar people who do not have the outcome of
interest (called controls). The investigator then retrospectively examines the his-
tories of both groups to determine current or previous exposure to the interven-
tion. This design is useful for establishing the relationship between low-frequency
outcomes that may be important (i.e., serious adverse outcomes) and an interven-

Table 4 Outcomes Research Analytic Survey (example)

Outcome of interest
(unaided walking)

Present Absent
Exposed to intervention (SPR)
Yes a b
No c d
280 Butler

tion. Using the same example as that used in defining outcomes research (i.e.,
spastic diplegia, selective posterior rhizotomy, and unaided walking), the matrix
that is created for the analysis looks exactly the same; the numbers in the cells
of course, differ.
A variation of this design is sometimes called a matched case-control study,
which begins by identifying the cases; then, for each case, a specified number
of controls (typically two to five) that match the case with respect to several
important characteristics (e.g., gender, age) are identified. Another variation is
used when the intervention can occur in degrees or categories of intensity, such
as the dose of a drug or exposure to varying degrees of asbestos; this is called
a 2 ⫻ k case-control study, with the k referring to the number of degrees or
categories of intensity of the intervention.

(h) ABA Design. In this study, baseline is established for the outcome
of interest through multiple measures made over a period of time. A treatment
period follows and the level or trend of the outcome is established. Finally, the
treatment is withdrawn with multiple measurements made again to observe
whether the outcome reverses. It allows two comparisons of change between
treatment and control phases.

(i) Cohort Study with Historical Control Group. This is a cohort study
that compares two groups of people, but only one group is currently studied by
the investigator. Rates of outcomes for the studied group are compared with those
of a control group of people who were studied at an earlier time when, or in a
place where, treatment policy (or availability) differed from that being investi-
gated. Alternatively, the rates are compared with rates of outcomes published for
a similar group who received a different intervention (literature control). Because
the comparison studies were not conducted under the same protocol, it is almost
certain that the people and the way their outcomes were measured is not the same,
posing significant threats to the validity of results under this research design.

( j) Case Series Without Control Group. A case series typically consists

of a single group of people who receive an intervention and are followed for a
time to observe their outcomes. The outcome is measured before and after the
intervention, but any rate of change is not compared directly with the rates that
occurred in people who were not receiving the intervention but were otherwise
comparable. In the absence of a firm base of expectancy or a control group to
establish an expectancy, a rate of change in a single group has little credibility.
The observed rate of change may have been influenced by some factor other than
the intervention or may have even happened without the intervention. The single
subject research equivalent of this group design is the AB design. In the AB
study, the investigator makes repeated measures during a baseline phase followed
Research in CP 281

by measures during an intervention phase. Only one comparison of change be-

tween treatment and control phases is possible.

(k) Case Reports. These describe small collections of cases that usually
involve a careful review of records. Their main value is in documenting the occur-
rence of events that otherwise are known to be exceedingly rare.

(l) Anecdotes. Anecdotes are uncontrolled observations reported in a

study. They do not establish causality, but they are useful to document that an
outcome has, at least, been observed to occur in association with the intervention.
Anecdotal reports of outcomes may also be useful for the formation of hypotheses
for subsequent study. Anecdotal evidence includes comments reported by the
author with or without any quantification. If the information is formalized and/
or quantified (e.g., subjects’ responses in an interview or questionnaire at the
conclusion of a study), but not compared to responses to similar questions elicited
prior to treatment, this is regarded as anecdotal evidence.

(m) Expert Opinion Without Explicit Critical Appraisal (Testimonial Evi-

dence). This is defined as a statement of belief by an individual or a group
about the effect of an intervention on an outcome without description of support-
ing evidence or rationale.

(n) Theory Based on Physiology, Bench, or Animal Research. Evidence

about an intervention is said to be theoretical, if (1) no empirical observations
exist about the effect of the intervention on outcomes, but (2) there is an appeal
to a set of beliefs, based on knowledge of the pathophysiology of the disease
and the mechanism of action of the intervention. This can be based on basic
science (bench) research, animal research, or an analogy (i.e., screening for breast
cancer may rest on the evidence—(or belief)—that screening for another type
of cancer is effective in reducing mortality).

(o) Common Sense or First Principles. Occasionally there will be virtu-

ally unanimous agreement about the merits of an intervention, despite the fact
that there is no external evidence pertaining to the intervention and no obvious
biological theory that directly supports it. In developmental disabilities, an exam-
ple of a common sense intervention is the multidisciplinary approach to care of
children with complex developmental disabilities. An example of a first principles
or common sense intervention that went wrong, however, is the CAST study.
Controlling blood pressure in people with aortic dissection is based on the princi-
ple that lowering blood pressure will reduce ventricular output and so decrease
the risk of further extension of the dissection. First principles suggest that prophy-
lactic treatment with antiarrhythmics that reduce these arrhythmias must also
reduce mortality. The CAST study randomized people with these post-MI ar-
282 Butler

rhythmias to flecainide/encainide or placebo, but found that more people on an

antiarrhythmic died than those on placebo.

VII. SUMMARY

Research about the treatments for cerebral palsy has a relatively short history.
In the 50 years since academic and scientific discourse formally originated, the
field has moved through and beyond a fertile period of exploring innovative treat-
ments that might improve the quality of life of people with cerebral palsy. In the
rush to be helpful, treatments proliferated and were adopted or discarded with
little concern for systematic scientific evaluation. Instead of evaluating treatment
outcomes, research efforts focused on issues of etiology, diagnosis, prognosis,
and the development of measurement tools.
With maturation, the field has evolved to the understanding that even
though a treatment idea based on current knowledge or theory of physiology is
sensible, this does not guarantee that the approach will work. Moreover, there is
a need to know in which dimensions of disablement an approach does work so
that those who live with cerebral palsy can decide which outcomes matter most
to them. Coincident with this evolution has been the generalized paradigm shift
in medicine to evidence-based practice. The result has been the recognition that,
until there is a firmer grasp on the efficacy and relevance of our treatments in
cerebral palsy, responsible clinicians must temper their enthusiasm for estab-
lished, or new, treatments with a sober and scientifically cautious approach to
their continuation or adoption.
The American Academy for Cerebral Palsy and Developmental Medicine
has assumed leadership in describing a conceptual framework in which evidence-
based efficacy of various treatments in use, and new options that appear, can be
evaluated. With this tool, the field has the potential for moving forward in several
ways with regard to treatment outcomes. Consensus can be reached about the
levels for which there is evidence of efficacy. Meaningful comparisons between
interventions can be made. Use of the model should prompt the research commu-
nity to include multiple outcome measures in study protocols to establish whether
effects of an intervention in one dimension can be linked to effects in other dimen-
sions. Research agendas will be guided because the dimensions where adequate
information is lacking, as well as the need for more definitive types of research
designs, can be visualized and future research encouraged to address these gaps
in our knowledge.

REFERENCES

1. Adams R, Snyder P. Treatments for cerebral palsy: Making choices of intervention

from an expanding menu of options. Infants and Young Children 1998; 10:1–22.
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2. Campbell SK. The child’s development of functional movement. In: Campbell S,

VanderLinden D, Palisano R, eds. Physical Therapy for Children. Philadelphia: W.B.
Saunders, 1994:1–7.
3. Bly L. A historical and current view of the basis of NDT. Pediatr Phys Ther 1991;
3:131–135.
4. Peacock WJ, Arens LJ. Selective posterior rhizotomy for the relief of spasticity in
cerebral palsy. S Afr Med J 1982; 62:119–24.
5. Sackett D, Rosenberg W, Muir Gray J, Haynes R, Richardson W. Evidence-based
medicine: what it is and what it isn’t. Br Med J 1996; 312:71–72.
6. Sackett DL, Richardson WS, Rosenberg W, Haynes RB. Evidence-based Medicine:
How to Practice and Teach EBM. New York: Churchill Livingstone, 1997.
7. Butler C. Outcomes that matter. Devel Med Child Neurology 1995; 37:753–754.
8. Butler C, Goldstein M, Chambers H, S Harris, R Adams, J Darrah, J Leach. Evaluating
research in developmental disabilities: a conceptual framework for reviewing treat-
ment outcomes. Devel Med Child Neurol 1999; 41:55–59.
9. Butler C. AACPDM Methodology for Developing Evidence Tables and Reviewing
Treatment Outcome Research. Internet at www.aacpdm.org: American Academy for
Cerebral Palsy and Developmental Medicine, 1998 (Last Update: August 1, 1999).
11
Evidence Tables and Reviews of
Treatment Outcomes
Charlene Butler
Health and Special Education Consultant, Seattle, Washington

I have no hesitation in advising you to experiment in support of your views

because, whether you confirm them or refute them, good must come from
your exertions—Michael Faraday, 1834.
The pursuit of answers about treatment outcomes may create tensions within
us—between our belief in unbiased empirical examination of the issues and our
concern that the possible revelation of inadequate evidence will result in medical
care being withheld from these children. Without objective observations, how-
ever, we cannot know which interventions work, for whom, and under what con-
ditions. Without this knowledge we cannot know whether we need to search
further for interventions that do work or that work better.
The goal of this chapter is to explore a way of thinking about the evidence
gleaned from ‘‘our experiments’’ or studies of various treatments and to expand
our thinking about the effects of what we do in our clinical practices. Using the
conceptual framework described in Chapter 10, results of studies can be consoli-
dated in evidence tables that will lead us toward being able to confirm or refute
the efficacy of treatments in use or new treatments as they appear.
A selective review of three types of treatments or interventions for very
young children with cerebral palsy will demonstrate how outcomes data may be
organized and analyzed to determine the current state of the evidence about any
intervention. As we will see from the reviews of treatments that have been se-
lected for analysis, this framework lends itself to evaluating (1) a very specific
type of intervention (e.g., feeding via gastrostomy tube): (2) an intervention that
may vary from one clinician to another in precisely how it is practiced (e.g.,
neurodevelopmental therapy or NDT); and (3) an intervention that may be com-
285
286 Butler

posed of other interventions (e.g., early intervention with physical therapy for
infants considered to be at risk for developing cerebral palsy includes a variety
of motor therapies).

I. METHOD FOR CONDUCTING REVIEWS OF

INTERVENTIONS
A. Subjects
Given the paucity of treatment outcome studies conducted only with children
diagnosed with cerebral palsy under the age of 3, these reviews include studies
that contained at least some infants or preschoolers. When results are given for
the youngest subgroup of subjects within a larger study, just the results for these
youngest children are included in the evidence tables.

B. Literature Search
Each of the reviews includes published studies for which full text is available in
English and is accessible through the U.S. university library system, and studies
for which published abstracts are available. Searches were conducted through the
electronic, bibliographic MEDLINE data base of the National Library of Medi-
cine (1966 to spring of 1999) using two search programs (Clinical Query of
PubMed and EndNote) and the exploded terms cerebral palsy, infants, and pre-
school children as well as types of studies (e.g., clinical trials, cohort studies).
Reference lists in studies and review articles and researchers knowledgeable
about this intervention were consulted.

C. Organization of Summary and Evidence Tables

The first table in each review summarizes the studies. Section 1 of this table
describes the intervention and the subjects. Section 2 describes the research meth-
odology and indicates whether specific results were available for the subjects
with cerebral palsy. Each study is classified to indicate the relative strength of
the credibility (i.e., internal validity) of the outcomes it produced; these levels
of evidence were described in detail in Chapter 10. AACDPM guidelines are
followed for determining the level of evidence each study represents (1). Where
studies of subjects with mixed diagnoses provide separate results, only those
results for the subjects with cerebral palsy are shown in the subsequent evidence
tables. When studies are conducted in two parts or when there are two or more
subgroups for whom outcomes are reported, the evidence tables show outcomes
as such.
Treatment Outcomes 287

The second table in each review summarizes the results for each study.
Some studies report a group result, usually a mean score, that reflects the differ-
ence between treatment and another condition. This may be the difference be-
tween a treated group and a control group. In a case series that has no control
group, the group result is the assessed difference between the group before treat-
ment compared to after treatment. Alternatively, some studies report the unifor-
mity of effect within the treated group (i.e., the number who improved, the num-
ber who worsened, and the number who were unchanged). Some studies report
both types of results.
Each result is classified according to the dimension of disablement in which
it had an effect. These five dimensions were described in detail in Chapter 10.
AACDPM guidelines are also followed to determine the dimension of dis-
ablement represented by each result (1). Greater confidence can be placed in any
results that were subjected to statistical evaluation and that were from studies
with higher internal validity (i.e., levels of evidence); this information is also
contained in the second summary table. Section 1 of this summary table shows
results of treatment when compared to another condition. When uniformity of
results within a treated group is reported, these results are shown in Section 2
of the table.
Evidence tables are a convenient way to consolidate evidence. The third
table in each review aggregates all the research results and demonstrates the cur-
rent state of our knowledge about the intervention. Section 1 of the evidence
table aggregates the outcomes of treatment when it has been compared to another
condition; Section 2 aggregates what is known about the uniformity of effects
within treated groups. Finally, evidence about adverse effects or medical compli-
cations is reported in a fourth table.

D. Analysis of Evidence
The reviews of research seek to evaluate not only the effect of an intervention
based on its anticipated mechanism of action in the expected dimension, but also
to evaluate possible effects in other dimensions of disablement. Evidence tables
will be analyzed to answer the following questions for each intervention:
1. What evidence exists about the effects of the intervention in the dimen-
sion in which there is an anticipated mechanism of action and how
uniform are those effects?
2. What evidence is there about its effects in the other dimensions?
3. What linkages exist for treatment effects within and between these
dimensions of disablement and in which directions?
4. Are there subgroups for whom the intervention may be more or less
effective?
288 Butler

5. What kinds and magnitude of complications have been documented?

6. What is the strength of the evidence for the intervention?

E. Caution About Drawing Conclusions

In science, in general, we can never be sure of anything; we can only be 95%
sure or 99% sure. In the absence of certainty, we must always retain at least the
willingness to accept an alternative hypothesis. Moreover, it must be kept in mind
that even the most stringent empirical research study does not supply negative
proof; it can only provide a probability that, if a treatment produced effects, those
effects will have been detected. Those probability calculations are reported in
the Summary of Results tables whenever statistical evaluation of results was con-
ducted in a study. But even when the probability of the result is high, extra caution
must be used in drawing conclusions because these probability calculations in
cerebral palsy research are based on such relatively small numbers of subjects.
Large numbers of subjects simply are not available for research because the inci-
dence of cerebral palsy in the general population is low.
Extra caution must be exercised in regard to the scientific method used to
arrive at the levels of evidence; the AACPDM methodology is new and still
evolving. While this scientific method for analyzing and weighting studies for
bias and error continues to be improved by the Academy, caution should be
exercised about drawing conclusions beyond what may be appropriate.

II. REVIEW OF THE EFFECTS OF GASTROSTOMY

FEEDING IN YOUNG CHILDREN WITH CEREBRAL
PALSY
A. Feeding Problems and Their Consequences
There are a number of potential impediments to normal nutrition in children with
cerebral palsy. These children may be unable to eat by mouth due to incoordina-
tion of tongue and swallowing muscles, temporomandibular joint contractures,
hypoxemia, vomiting and discomfort associated with gastroesophageal reflux,
food refusal, and fatigue experienced during feeding (2, 3). The more severe the
degree of motor impairment, the greater the oral deficit and gastrointestinal tract
dysfunction that leads to inability to ingest or digest sufficient amounts of food.
Seriously compromised oral feeding has significant consequences (2). After
reduced mobility, poor feeding ability is the best single predictor of early death
in profoundly disabled individuals with mental retardation (4). Without adequate
nutrition in early childhood, it is generally held that potential brain or physical
development will not be achieved (5). Malnutrition is associated with diverse
Treatment Outcomes 289

complications of health. Decreased muscle strength in the respiratory system re-

duces the effectiveness of the cough reflex and predisposes to aspiration pneumo-
nia. Vomiting and acid reflux also increase the risk of aspiration. Cold, mottled
extremities, frequently seen in malnourished children, are the result of decreased
blood circulation. Disturbances in the immune system secondary to malnutrition
predispose to infection, particularly in the lungs and urinary tract. Healing of
pressure sores is delayed in malnourished children. Malnutrition increases irrita-
bility and decreases motivation and energy. Finally, coughing, choking, cyanotic
episodes, vomiting, and acid reflux during mealtimes are often associated with
feeling sick, which may lead to food refusal.
For these reasons, when conventional treatment (i.e., positioning the child,
therapeutic techniques to facilitate lip closure and swallowing, thickened food,
and extended feeding time) has failed to resolve severe, chronic feeding disorders,
permanent gastrostomy may be considered as a means of by-passing oral-motor
and gastrointestinal dysfunctioning. Nasogastric tube feeding, another alternative,
is the preferred method for short-term enteral feeding. Its long-term use, however,
has several limitations, including nasal discomfort, irritation or penetration of the
larynx, recurrent pulmonary aspiration, and blockage or displacement of the tube
(6). Moreover, one study of factors affecting survival rate in children with severe
neurological disabilities showed that children fed by gastrostomy tube had a sta-
tistically significant better survival rate at 10 years than did children fed by naso-
gastric tube.

B. How Does Gastrostomy Work?

Gastrostomy is a form of enteral feeding that has been used since the late 1800s.
Its primary goal is to provide adequate nutrition. A surgical opening is made
through the abdominal wall and stomach to insert a feeding tube (4). Today,
operative gastrostomy requires a laparotomy with potential surgical and anaes-
thetic risks, especially in patients with neurological dysfunctions and severe mal-
nutrition. The percutaneous endoscopic gastrostomy (PEG) technique has been
increasingly used in disabled children (6). This procedure has been described in
the literature and can be performed as a day case, preferably under general anaes-
thesia (6). Nevertheless, it is recommended only for children who have such a
marked degree of oral-motor dysfunction that they (1) require longer than 6 weeks
of nasogastric tube feeding; (2) take an inordinately long time to feed; (3) have
inadequate weight gain; and (4) have an unsafe swallow (i.e., significant risk of
aspiration of food) demonstrated on a contrast videofluoroscopy. Children who
have moderate-to-severe gastroesophageal reflux, children with ascites, and chil-
dren who have had previous abdominal surgery are regarded as unsuitable candi-
dates (6, 7).
290 Butler

Malnutrition and growth failure are no longer accepted as inevitable and

irremedial consequences of cerebral palsy. As a result, gastrostomy may play a
role in promoting the growth of children with otherwise inadequate dietary intake
or malnutrition and in improving their quality of life. What is the documentation
of its impact on growth and on quality of life for both the patient and caregiver?

C. Search Results
When the MeSH term ‘‘gastrostomy’’ was added to the search parameters noted
earlier, 15 citations were identified. Based on review of the abstracts, nine full-
text articles were obtained and examined. Five studies met the inclusion criteria
for the review. Four of these studies compared measures of growth made before
gastrostomy feeding with those made after a period of gastrostomy feeding. One
additional study reported complications, including mortality rates and anecdotal
information (8). No study has used a control group.

D. Review of Studies
The five studies are briefly described below and are summarized in Tables 1 and
2. All of these studies compared effects of treatment to no treatment; in other
words, effects of feeding via gastrostomy were compared to feeding without gas-
trostomy (i.e., oral feeding).
In 1986, Shapiro et al. investigated whether growth failure is the result of
neurological dysfunction or of nutritional deficiency (9). Changes in weight and
height after at least 6 months of feeding by gastrostomy were evaluated. The
investigators concluded that nutritional factors appear to have a role in the growth
failure of children with cerebral palsy in regard to weight but not in regard to
linear growth.
Two years later, Rempel et al. measured weight and height growth in chil-
dren, half of whom had a gastrostomy during the first 4 years of life and most
in the first year (10). Attainment of minimum standards of growth were most
frequently seen in the 21 children treated early (before age 2), compared with
those treated later (after age 2); only the data for this youngest group are shown in
the evidence tables. The authors concluded that gastrostomy feeding can improve
nutritional status and even produce an overweight condition. Furthermore, they
stated that the high death rate they observed was not related to the gastrostomy
surgery but was indicative of the severe morbidity in the children and their sig-
nificant degree of malnutrition.
In 1990, Sanders et al. investigated the effect of timing of enteral feeding
(early, middle, or late start) on reversing nutritional deficit (11). The early group
included 14 children whose gastrostomy occurred within 1 year of their central
nervous system dysfunction; only their results are included in the evidence tables.
Treatment Outcomes 291

However, the description of all three groups, prior to gastrostomy, demonstrates

that the longer a chronic state of malnutrition persists, the greater the morbidity.
The early group (those who began gastrostomy feeding within 1 year of the onset
of central nervous system dysfunction that restricted feeding) was moderately
undernourished for weight but normal for height and weight/height before gas-
trostomy. The middle group (who began enteral feeding within 8 years of their
central nervous system dysfunction) was on the borderline between severely and
moderately undernourished for weight, moderately undernourished for height,
and moderately undernourished for weight/height. The late group (who had a
gastrostomy after 8 years) was quite severely undernourished for weight and for
height and had a significant number of chronic secondary conditions, including
severe esophagitis and chronic lung disease from repeated pneumonia. The inves-
tigators concluded that the earlier adequate nutrition is initiated, the more readily
the consequences of malnutrition will be reversed.
A 1992 study analyzed the success of gastrostomy by documenting sur-
vival, early and late complications after the procedure, and caregiver satisfaction
(8). The authors concluded that noninstitutionalized children with severe cerebral
palsy who undergo gastrostomies have a much higher survival rate than adults
or severely mentally retarded children undergoing similar procedures.
In 1996, catch-up growth in a series of failure-to-thrive children who had
gastrostromy surgery was analyzed according to medical diagnoses and other
factors that may affect growth (i.e., age at surgery, ambulatory status, prematu-
rity, or mode of feeding) (4). There was no statistically significant growth in
children with scoliosis, chromosomal abnormality, perinatal infection, or sudden
trauma, but catch-up growth in children with cerebral palsy was statistically sig-
nificant in all measures. Only the results of the children with cerebral palsy are
reported here. In this study, catch-up growth was found to be more rapid for
children older than 2 years.

E. Evidence Tables
Table 3 aggregates all results and demonstrates that treatment outcomes have
primarily been investigated in the dimension of impairment. Table 3, Section 1,
shows nine measures of impairment; three measures of functional limitation; and
one measure in the societal limitation or other context factors dimension. The
preponderance of evidence about uniformity of effect is also in the impairment
dimension. There is no evidence available about the effects of gastrostomy feed-
ing in the dimensions of pathophysiology or disability/participation.
Table 4 demonstrates that adverse effects have been reported in relation to
gastrostomy. Because all of these studies were case series with no control group,
neither the rates of these adverse outcomes nor those of the positive outcomes
can be compared to those in similar groups of in those studies.
 292
Table 1 Summary of Studies

Section 1. Intervention and subjects.

Study (Ref.) Treatment Population sampled # Total # CP Ages

9 Gastrostomy Severe CP ⫹ MR ⫹ FTT 19 19 5 mo.-14 yr.
10 Gastrostomy Severe CP ⫹ MR 57 57 3 mo.–18 yr.
Done ⬍ age 2 21 21
11 Enteral feeding Severe CP 51 51 3 mo.- 15 yr.
Early 14 14
8 Gastrostomy Severe CP 61 61 0–17 yr.
4 Gastrostomy FTT 75 37 0–6 yr.

CP ⫽ cerebral palsy; MR ⫽ mental retardation; FTT ⫽ failure to thrive.

Section 2. Research methodology

Research design and level Duration # in Rx # in control

Study (Ref.) of evidence of Rx group group

9 Retrospective case series, Level V 6–41 mo. 19 0

10 Retrospective case series, Level V 3 mo.–18 yr. 21 0
11 Prospective case series, Level IV 6 mo. 51 0
Early treated group 14 0
8 Post Rx descriptive study, Level V 6 yr. 61 0
4 Retrospective case series 18 mo. 37 0

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Table 2 Summary of Results

Treatment Outcomes
Section 1. Results of gastrostomy compared to no treatment. Outcomes of gastrostomy feeding were compared with outcomes of oral
feeding before the gastrostomy.
Clin. Inferential
Study (Ref.) Outcome Dim. Measure Result imp. statistics LOE
9 Weight I Wt./length, z score ⫹ yes p ⬍ .01 V
10 Weight I ⬍5%ile wt./ht.a ⫹ sml p ⬍ .01 V
Irritability I Anecdote ⫹ yes V
Ease of feeding FL/A Anecdote ⫹ yes V
Caregiver satisfaction SL/C Anecdote ⫹ yes V
11c Weight I % of ideal wt.a ⫹ yes IV
Weight I % of wt./ht.a ⫹ sml IV
Height I % of ideal ht.a ⫹ sml IV
Dev. activities FL/A Anecdote ⫹ yes V
8 Feeding FL/A Estimated time ⫹ yes V
4 Weight I z scorea ⫹ p ⫽ .0001 V
Height I z scorea ⫹ p ⫽ .007 V
Height/weight I z scorea ⫹ p ⫽ .01 V
a
National Center for Health Statistics growth charts.
b
Indices of undernutrition.
c
Results for early treated group only.
Clin Imp ⫽ clinical importance; LOE ⫽ Level of evidence; Dim. ⫽ Dimension of disablement.

Section 2. Uniformity of results within treated groups.

Study (Ref.) Dim Outcome Measure ⫹ ⫺ ⫾ LOE
9 (n ⫽ 19) I Weight Wt./length 84% 16% V
I Weight Wt./age 84% 16% V
I Length Length/age 58% 42% V
10 (n ⫽ 21) I Weight Wt. for ht.a 50% 50% V
8 (n ⫽ 61) FL/A Abilities/comfort Phone interview 94% V

293
SL/C Caregiver satisfact. Phone interview 93% V
a
National Center for Health Statistics growth charts.
Table 3 State of Knowledge About Outcomes of Treatment with Gastrostomy Feeding in Cerebral Palsy
Section 1. Outcomes of treatment compared to no treatment.

294
The evidence about each outcome is indicated by its level of evidence code (I through V) in the appropriate column showing positive
and statistically valid results (⫹ *); positive (⫹) or negative (⫺) results that were not subjected to statistical evaluation; or results that
were not different and/or were not statistically significant (⫾ and NS ). References to the study that produced the outcome are in
parentheses. For example, positive and statistically valid results have been measured for weight growth three times in three different
studies (all Level V evidence), and positive results without statistical validity have been measured twice, using different types of
measurement, in the same study (both Level IV evidence).
Outcome ⫹* ⫹ ⫺ ⫾ or NS
Pathophysiology
Impairment Weight V(9) V(10) V(4) IV(11) IV(11)
Height V(4) V(4) IV(11)
Irritability V(10)
Functional limitation/ Feeding V(10) V(8)
Activity
Developmental activities V(11)
Disability/participation
Societal limitation/ Caregiver satisfaction V(10)
Context
Section 2. Uniformity of results within treated groups. Percentages of individuals within studies that demonstrated positive (⫹), nega-
tive (⫺), or unchanged outcomes (⫾) with the Level of evidence code for the study which produced the data (i.e., 50% V). References
to the study that produced the outcome are in parentheses. For example, two studies (both producing Level V evidence) reported varia-
tion in weight growth (using different types of measures) to be 50–84%, 16% weight loss, 50% weight unchanged.
Outcome ⫹ ⫺ ⫾
Pathophysiology
Impairment Weight 84% V(9) 16% V(9)
84% V(9) 16% V(9)

Butler
50% V(10) 50% V(10)
Functional limitation/Activity Abilities/comfort 94% V(8)
Disability/Participation
Societal/limitation/Context Caregiver satisfaction 93% V(8)
Treatment Outcomes 295

Table 4 Adverse Effects and Medical Complications

(Ref.) Type of effect # of Cases % of Cases

9 (n ⫽ 19) Persistent vomiting 5 Not given

10 (n ⫽ 57) Deaths after 1 year 8 23% major com-
Gastrointestinal bleeding and ulcer- plications
ation 5
Dehiscence of wound 1
Peritonitis and bowel obstruction need-
ing reoperation 3
Tube migration 2
significant postoperative GER requir-
ing fundoplication surgery 4
Became overweight for height 12
11 (n ⫽ 51) Deaths 7 Not given
Associated fundoplication surgery for
GER 48
8 (n ⫽ 61) Deaths after 2 years 16 32% early com-
Vomiting, retching, and dumping plications
Hiatal hernia 11
Unable to bolus feed 7
Recurrent reflux and aspiration 1
Recurrent reflux aspiration 1 39.3% late com-
Small bowel obstruction 1 plications
Recurrent pneumonia/aspiration 4
Apnea 1
Wound infection 2
2

F. Analyzing the Evidence

1. What Evidence Exists About the Effects of Gastrostomy on
Growth Failure (an impairment of structure) and Other
Impairments of Structure or Physiological Function in
Youngsters with Cerebral Palsy?
Group measures of weight as a function of growth were consistent in showing
that gastrostomy feeding promoted weight gain. However, weight gain was not
experienced by every child according to two studies that reported the uniformity
of effect on weight. These two studies establish a frequency of weight gain to
be between 50% and 84% of children studied. Weight decelerated in some chil-
dren (16%) and was unchanged in others (50%). One of these studies reported
296 Butler

that 12 of the children who gained weight became overweight for their height,
creating a potential complication for physical management.
Measuring growth as a function of height or, in most cases, recumbent
length, also showed improvement on average in two studies. However, these were
small gains and a third study reported that only 58% of its subjects increased in
length while 42% measured shorter. There may be other factors responsible for
failure to document height growth. The tendency of children with severe cerebral
palsy to decelerate in rate of linear growth was described as early as 1962 and
was attributed, at least in part, to atrophy of the lower extremities or to scoliosis
(12). An analysis of factors affecting growth by one of the studies showed that
scoliosis was a statistically significant factor in length growth in their sample of
children with gastrostomy feeding (4). Obtaining a reliable measurement of
length may also contribute to the inconsistent findings, however. Contractures
make accurate measurement difficult. Repeated measures of 10 parameters of
growth and body composition in a study of a mixed population revealed that
recumbent length measurement was extremely unstable (13). Only three measures
did prove to be stable: weight, arm muscle, and arm fat stores.
These findings may suggest the presence of subgroups for whom gastros-
tomy has different effects. Alternatively, it may suggest that each child’s caloric
needs must be individualized and monitored. In a related study that measured
dietary intake and energy expenditure in children with cerebral palsy, an extreme
variation in calories needed to maintain ideal weight was found (14). This was
also found to be true in one of the case series for children with cerebral palsy
fed via gastrostomy; there was a wide variation in the calorie and calcium intake
per kilogram needed to produce weight gain in the individuals in the series (11).
Anecdotal evidence suggests that impairment of emotional function was
also affected. Children were said to become less irritable and to have ‘‘better
dispositions.’’

2. What Evidence Is There About the Effects of Gastrostomy

on Pathophysiology, Functional Limitation/Activity,
Disability/Participation, and Societal Limitation/Context
Factors?
There is no evidence about changes in pathophysiology as a result of feeding via
gastrostomy; in other words, changes in cellular or molecular structures or func-
tions have not been investigated. This is also no evidence about changes in the
dimension of disability/participation; that is, participation as a family member,
the primary societal role of a very young child, has also not been measured.
There is anecdotal evidence about positive effects of gastrostomy feeding
in the functional limitation/activity dimension. Eating was easier and faster (a
decrease of about 1.5 hours a day). Children engaged in more activities that par-
Treatment Outcomes 297

ents related as demonstrating developmental progress. There is also anecdotal

evidence from two studies that caregivers were satisfied with the effects of gas-
trostomy.

3. What Linkages Exist for Treatment Effects Within and

Between These Dimensions of Disablement and in Which
Directions?
The evidence is extremely sparse, but it hints at a link between growth (which
probably represents better nutrition) and improved well-being and developmental
progress.

4. Are There Subgroups for Whom Gastrostomy May Be More

or Less Effective?
Uniformity of effect data show that some children’s growth improves, some con-
tinue to fall behind, and some are unchanged. This suggests that there may be
subgroups who respond differently to gastrostomy feeding. Two studies analyzed
age as a factor and found that attainment of minimum growth standards appears
to occur more frequently in children treated early (10, 11), but other factors have
not been identified.

5. What Kinds and Magnitude of Complications Have Been

Documented?
For many children in these studies, malnutrition was a serious and potentially
life-threatening problem prior to gastrostomy. There were some deaths after chil-
dren had gastrostomies, but only one occurred in proximity to the surgery (1
month postsurgery). Rempel et al. concluded that the death rate in their case
series was indicative of the severe morbidity in the group. In a related study of
death rates among children with severe neurological disabilities, the strongest
predictor of death was found to be the presence of other significant diseases (15).
Comparison of the death rates of three groups in one of these case series would
seem to support this; the death rate was distinctly higher in the group of children
who had the most pronounced state of malnutrition and most chronic secondary
conditions before gastrostomy (11). In contrast, however, another study detected
no significant differences between the survivors and non survivors either in the
average age at the time of gastrostomy or in the medical procedures or complica-
tions that they experienced (8).
The overall rates of major complications in two studies were reported to
be 23% (10) and 39.3% (8).
While there is a high incidence of gastroesphogeal reflux (GER) in neuro-
logically impaired children (2), it appears that GER can also be a side effect of
298 Butler

gastrostomy feeding. Three studies report or allude to gastrostomy feeding either

exacerbating existing GER or causing it (8, 10, 11). However, no study specifi-
cally reported the number of cases in which GER developed or became more
serious after gastrostomy placement. Despite this lack of data, it is nevertheless
being recommended in review articles that children who have moderate-to-severe
gastroesophageal reflux be considered unsuitable candidates for gastrostomy
placement since GER can cause aspiration pneumonitis and nutrient loss (2).

6. What Is the Strength of the Evidence?

Strength of the evidence depends on several factors: how extensively the popula-
tion has been sampled reflected in the number of different studies and the overall
number of subjects, the consistency of results across the studies, and the ro-
bustness of the research methods used. This body of evidence about gastrostomy
for very young children with cerebral palsy is very limited in regard to both in
the population that has been sampled: only five studies with a total of 152 subjects
that had cerebral palsy, not all of whom were infants at the time of gastrostomy
placement. The number and types of outcomes that have been measured are few.
The credibility of the outcomes is very low (Level V with the exception of one
Level IV study). The greatest strength in this body of evidence is the consistency
of positive and clinically important group results for weight across the five stud-
ies, although this is weakened by the uniformity of results data that show some
individuals do not experience improved outcomes.

G. Discussion
The primary goal of gastrostomy feeding is to provide adequate nutrition in chil-
dren who are failing to thrive and who may, therefore, be at risk for significant
morbidity or even death. The evidence tables demonstrate that research to date
has successfully identified some possible important outcomes. It appears that gas-
trostomy feeding improves nutritional status with weight gain in most, but not
all, children with cerebral palsy. Elimination of linear growth retardation is less
clear. Attainment of minimum growth standards appears to occur more frequently
in children treated early (10, 11). However, conclusions about the relationships
between nutritional status, growth, morbidity, and developmental potential can
only be speculative given the very limited data currently available.
This intervention is associated with a high rate of complications that con-
tributes to the importance of establishing with greater certainty its apparent rever-
sal of malnutrition and its effects. These evidence tables demonstrate that suffi-
cient preliminary research has shown there to be promising positive effects.
Gastrostomy feeding is ready for and warrants definitive clinical trials in this
population.
Treatment Outcomes 299

Previous research has also been valuable in identifying the need to resolve
a critical measurement issue. Before future studies can accurately gauge the ef-
fects of nutritional status on growth, reliability of growth measures must be estab-
lished. Moreover, nutritional guidelines may also need to be redefined for this
population since body compositions that are different from typical children have
been identified.
Finally, the tables demonstrate a glaring lack of outcomes data across the
several dimensions of disablement. Future studies need to incorporate measures
across dimensions in order to explore whether reduced impairment (i.e., nutrition,
growth, morbidity, and development), if found to be definitively associated with
gastrostomy feeding, carries over to improved functional skills or activities, and
to increased participation in social roles of daily life. Given that the greatest
benefit of gastrostomy feeding may lie in the facilitation of care, future studies
also need to document the impact of gastrostomy feeding on the intensity of
caregiving that may be required.

III. REVIEW OF THE EFFECTS OF

NEURODEVELOPMENTAL THERAPY FOR YOUNG
CHILDREN WITH CEREBRAL PALSY
A. How Does Neurodevelopmental Therapy Work?
Neurodevelopmental treatment (NDT), or Bobath therapy, is the approach that
has dominated physical, occupational, and speech therapy for children with cere-
bral palsy for the past 30 years. It was described earlier in Chapter 5, but its
mechanism of action will be briefly reviewed again before presenting the evi-
dence.
The proposed mechanism of action of NDT is based on the neuromatura-
tional theory of motor development. The original goal of NDT, as described by
Bobath, was to elicit normal patterns of movement through controlled sensorimo-
tor experiences and to prevent the development of contractures and deformities
(16). These controlled sensorimotor experiences were assumed to inhibit abnor-
mal reflexes, tone, and movement patterns, and to facilitate more normal move-
ment patterns. According to Bly (17), the theoretical construct and practice of
NDT has changed over the years as knowledge of motor control has evolved.
NDT techniques now include less emphasis on reflex inhibition and more empha-
sis on functional activities and active participation of the child. As the same time,
other writers continue to define NDT theory and principles using the original
concepts (18). Thus, the changing nature of NDT principles, the lack of a consis-
tent and operational definition of NDT in the literature, as well as the variations
in how NDT is actually practiced presents a challenge in evaluating outcomes
of NDT.
300 Butler

Nevertheless, the goal of most motor therapies in cerebral palsy is to im-

prove motor function and development while preventing the development of con-
tractures and deformities. Improved motor development, in turn, may promote
other aspects of child development. Because parental involvement is also stressed
in NDT, an additional benefit of increased parenting skills and confidence may
be expected. Conversely, the demands it places on parents and family resources
may adversely affect family interaction patterns and priorities. Should neurode-
velopmental therapy continue to dominate motor therapy in children with cerebral
palsy? To what extent does the evidence document its impact on motor and other
domains of child development and on quality of life for both the child and family?

B. Search Results
The MeSH terms ‘‘neurodevelopmental therapy,’’ ‘‘NDT,’’ ‘‘physical therapy,’’
and ‘‘early intervention’’ added to ‘‘cerebral palsy,’’ ‘‘infants,’’ and ‘‘young
children’’ produced 32 citations. Based on review of the abstracts, 28 full-text
articles were obtained and examined. Reference lists in these studies and review
articles as well as researchers knowledgable about this intervention were con-
sulted. Fifty-eight articles were obtained; of that number, 16 potentially relevant
studies were identified.
This review included those studies in which the intervention for all the
subjects was either: (1) specified as NDT; (2) could be identified as NDT-based
(from description of procedures that included inhibition of primitive and patho-
logical reflexes, facilitation of postural reactions, and normalization of muscle
tone); or (3) was said to be a mix of NDT with other sensorimotor techniques
(a common circumstance in clinical practice). Eight studies of NDT in which the
subjects were exclusively infants and very young children and four studies in
which the subjects included infants and young children are reported in this re-
view. An early case report about NDT was excluded for lack of measured out-
comes (19), and three studies were excluded for the following reasons: treatment
approach was too diffuse (i.e., ‘‘proprioceptive and neuromuscular facilitation
and Bobath approach . . . used extensively in probably more than 50% of the
subjects’’) (20); NDT was confounded with orthopedic surgery (21); and out-
comes of CP subjects could not be determined (22).

C. Review of Studies
These 12 studies have used control groups and, in the main, compared NDT to
some other intervention; one compared a greater versus lesser intensity of NDT.
This was done in deference to the ethical concern of withholding a treatment
intervention from a group of children for the formation of a no-treatment control
group as well as to investigate whether intensity of therapy makes a difference.
The studies are briefly described below and are summarized in Tables 5–6.
Treatment Outcomes 301

The effects of NDT were first investigated in 1973 in a controlled trial that
included an external comparison of a group of treated children with an untreated
group plus an internal comparison of a third group of children who acted as their
own controls (23). Gross motor activities, retention of primary automatic reflexes,
and range of motion at the ankle and hip joints were the outcomes of interest.
No significant differences were found in measures made after either 6 or 12
months for the treated children. The group findings were generally representative
regardless of type of cerebral palsy (diplegia, hemiplegia, or quadriplegia), age
(under 6 months of age, 7 to 11 months of age, 12 to 17 months, or 18 months
to 6 years of age), or mental ability. Moreover, overall progress was made by
children, whether treated or not, as might be expected in a developing child with
the passage of time.
Two years later, a study was published that compared an approach based
on principles defined by the Bobaths, Rood, and Ayres (termed ‘‘facilitation’’)
with an approach that emphasized positioning and adaptive hand and self-care
skills (termed ‘‘functional’’) (24). Children, initially paired by developmental
age, type and degree of cerebral palsy, and chronological age, were randomly
assigned to one of the two interventions. After 6 weeks of treatment, the children
in the facilitation group showed greater gains in all areas of development mea-
sured, but only the gross motor gains were statistically significant.
With the neurodevelopmental approach rapidly replacing traditional ther-
apy in the United States, an investigation of an NDT-based therapy versus tradi-
tional therapy was undertaken and available for publication in 1976 (25). Infants
were randomly assigned to the experimental treatment (positioning and move-
ment to inhibit abnormal and immature reflexes or motor patterns and to facilitate
more mature motor development) or the control treatment (passive range of mo-
tion and exercises). Measures made at age 2 were compared with measures made
at entry to treatment but outcome measures of motor status, social maturation,
and home management of parents were not clearly defined. Some children im-
proved and some did not in both groups, but a greater percentage of children in
the NDT-based therapy improved on all three measures.
In 1981, a study of the effects of 5 months of NDT-based therapy in se-
verely mentally impaired children with cerebral palsy was published (26). Chil-
dren, initially matched for age and overall developmental level, were randomly
assigned to (1) a direct treatment group that described NDT-based procedures
provided by therapists formally trained in Bobath and Rood techniques or (2) a
supervised management group. A third group, the control group, received no
therapy. Each of the three groups made small and almost identical gains on a
developmental score and gross motor age score. No significant difference was
found in the appearance of mature developmental reflexes, improvement of gross
motor development, or increase of passive joint motion in the children in these
three groups.
302 Butler

Immediate effects of NDT were investigated using single subject methodol-

ogy and reported in 1983 (27). The study was replicated in four very young
children. During eight 1-hour sessions over a 5-week period, each infant partici-
pated for 25 minutes in NDT therapeutic handling alternating with 25 minutes
of simple physical handling during play by a non-therapist. There was not a
statistically significant difference in a test of functional position-holding given
after each NDT treatment compared with the same test given after each no-treat-
ment play session.
Single subject methodology was also used in a 1985 study to investigate
immediate effects of NDT techniques used in a treatment session compared with
effects following a free play session (i.e., no-treatment condition) (28). The re-
peated measures showed improvement in range of motion as measured by ankle
dorsiflexion and heel strike during movement to standing following the NDT
treatment condition compared to the no treatment conditions.
In 1988, a comparison of the motor, mental, and social outcomes of infants
with spastic diplegia who received physical therapy (NDT) versus an infant stim-
ulation control intervention was published (29). The infants were stratified for
developmental outcome and randomly allocated to the interventions. The blinded
assessment performed at 6 and 12 months showed no motor advantage for the
infants in the NDT intervention. Instead, the data favored the infants who received
the infant stimulation intervention on the motor quotient measure, and they were
more likely to walk as well. There were no significant differences between the
groups in the incidence of contractures or the need for bracing or orthopedic
surgery. In mental and social outcomes, there also were no significant differences
between the groups.
The randomized controlled trial described in the preceding study also
yielded additional psychological, behavioral, family, and parenting outcomes data
that were published 2 years later (30). Only 1 of 20 measures of infant tempera-
ment, maternal–infant interaction, or home environment showed any difference
between the groups of infants who had received NDT versus those who had
experienced the infant stimulation intervention. There was a statistically signifi-
cant greater score on maternal responsiveness for mothers of infants in the NDT
group.
A replication of design and procedures in the 1983 study was used to inves-
tigate effect of NDT on physiological function during dressing (31). Two children
were repeatedly assessed over 12 weeks. Observers, blind to the condition being
measured, rated specific movements such as shoulder mobility, associated reac-
tions, sitting balance, etc., while the children were engaged in dressing. Function
was no different immediately after an NDT treatment than after a play session.
Another 1990 publication of a single subject research design yielded data
about the effects of NDT on excessive knee flexion during walking (32). Repeated
measures were made during each of five, three-week long phases (A-B-A-BC-
A). A was a no treatment phase, B was an NDT treatment phase, and C was an
Treatment Outcomes 303

NDT plus orthosis treatment phase. Trend and level analyses showed improve-
ment during both treatment phases (with greater improvement in the NDT only
phase) compared with the no treatment phases.
Whether quantity of therapy has an effect on physiological hand function
or quality of movement and on fine motor development was investigated in a
randomized controlled trial published in 1991 (33). Power calculations suggest
that the study had sufficient power to detect the main effects of NDT. Intensive
NDT (45-minute therapy session twice weekly plus 30-minute home program
daily) was compared to regularly administered NDT (varied from as little as once
a month to as much as once a week plus a 15-minute home program three times
a week). Additionally, the combined effect of casting with NDT therapy was
studied, but these results are not pertinent to this review. Children were stratified
by age (under or over 4 years old) and severity of hand function before random
assignment to one of four groups: intensive NDT, regular NDT, intensive NDT
⫹ casting, or regular NDT ⫹ casting. The results indicated that there were no
statistically significant benefits on either outcome from intensive therapy alone.
Additional analysis of data suggested that the younger children in the NDT with
casting group demonstrated greater improvement. To confirm the possibility of
combined effects of NDT with casting in children under 4 years of age, the inves-
tigators then conducted the study described next.
Children under age 4 were stratified by age and hand function impairment
before random assignment to one of two interventions for 4 months: intensive
NDT combined with casting versus OT, which was based on functional activities
such as self-help, feeding, and playing (34). A 2-month wash-out period followed,
after which the groups crossed over to the opposite intervention. There was blind
assessment of measures before and after each intervention period and the wash-
out period. Analysis of the outcomes revealed no significant differences between
the treatments on any of four measures.

D. Evidence Table
A cursory look at the evidence in Table 7 shows that treatment results have
primarily been investigated in the dimension of impairment, that there is only
one measure for many of the outcomes, and that most of the results cluster in the
column showing no difference between treatment and control conditions. Little is
known about the impact of NDT on the child’s ability to perform activities, less
still about its impact on the family itself and home environment, and nothing
about its impact on the youngster’s participation in the family. Little is known
about the effect of increased amounts of therapy.
Some of the studies attempted to determine other factors that may be re-
sponsible for change, or lack of change, when youngsters are exposed to NDT
(Table 8). These studies analyzed the relationship between age, intelligence, se-
 304
Table 5 Summary of Studies

Section 1. Intervention and subjects

Study (Ref.) Rx Control Rx Population # Tot. Ages

23 NDT No Rx Spastic diplegia, hemiplegia, 47 ⬎ 6 mo.–6 yr.

quadriplegia
24 Facilitationa Functional Spastic diplegia, hemiplegia, 16 1–5 yr.
quadriplegia
25 Neurophysiogica Traditional Spastic quadriplegia, hemiple- 22 5–17 mo.
gia; athetosis
26 NDTa Gr 1 No Rx CP (all types) and severe MR 29 3–22yr.
Gr 2b
27 NDT No Rx (play) Spastic quadriplegia, hemiple- 4 10–22 mo.
gia, diplegia, hyptonia
28 NDT No Rx (play) Spastic quadriplegia 1 2.5 yr.
29 NDT 6 mo. infant stimulation; Spastic diplegia 48 12–19 mo.
6 mo. NDT
30 NDT 6 mo. infant stimulation; Spastic diplegia 48 12–19 mo.
6 mo. NDT
31 NDT No Rx (play) Spastic diplegia 2 27, 32 mo.
32 NDT & NDT⫹ orthotic No Rx Spastic diplegia 1 2 yr.
33 1. NDT intensive 1. NDT regular Spastic hemiplegia or quad- 18c 18 mo.–8 yr.
riplegia ⬃
34 NDT⫹ casting Functional skills OT Spastic diplegia, hemiplegia 50 18 mo.–4 yr.
and quadriplegia
a

Butler
Included neurodevelopmental treatment principles advocated by Bobath, Rood, and Ayres.
b
Supervised PT management but no direct therapy.
c
Total n ⫽ 76 in 4 groups, 2 of which included casting ⫹ NDT; the NDT only group data are reported here for those 18 subjects.
 Treatment Outcomes
Section 2. Research methodology.

# in Rx # in Control
Study (Ref.) Research Design and Level of Evidence Duration Group group

23 RCT (3 groups), Level II

External comparison 1 6 mo. 16 31
External comparison 2 12 mo. 7 10
Internal comparison 6 mo. 9 9
24 RCT (2 groups), Level II 6 wk. 8 8
25 RCT (2 groups), Level II 7–21 mo. 14 8
26 Concurrent cohort study, Level IV 5 mo. 10
Control group 1 9
Control group 2 10
a
27 Multiple crossover alternating treatments trial, Level II 5 wk. 4
a
28 ABA design, Level III 25 days 1
29 RCT (2 groups), Level I 12 mo. 25 23
30 RCT (2 groups), Level I 12 mo. 25 22
a
31 Multiple crossover alternating treatments trial, Level II 12 wk. 2
a
32 A-B-A-BC-A trial, Level II 15 wk 1
33 RCT (2 groups reported), Level I 9 mo. 18 18
Intensive vs. regular amt. NDT
a
34 RCT (2 groups), Level I 10 mo. 50
a
Subjects were their own controls.

305
Table 6 Summary of Results
Section 1. Results of treatment compared to another condition or of greater versus lesser intensity NDT.

306
Clin. Inferential
Study (Ref.) Outcome Dim. Measure Result imp. statistics LOE
23 Automatic reflexes I Rated observation U no NS II
ROM (2 movements) I Not specified U no NS II
Gross motor acts FL/A Rated observation ⫺ no NS II
24 Motor age I Bayley Motor Sc. ⫹ p ⬍ .05 II
Gross motor age I DDST a , Motor Sc. ⫹ p ⬍ .05 II
Fine motor age I DDST, Fine M. ⫹ NS II
Scale
Social age I DDST, Social Sc. ⫹ NS II
Language age I DDST, Lang. Sc. ⫹ NS II
25 Physiological function I Motor Dev. Eval. ⫹ II
Social activities FL/A Questionnaire ⫹ II
Home management SL/C Questionnaire ⫹ II
26b Dev. reflexes I Wilson DR Test ⫺ NS II
Gross motor age I Gross Motor Eval. ⫺ NS II
ROM (6 movements) I ROM Scale NS II
27 Functional positions FL/A Rated observations NS II
28 ROM (dorsiflexion) I Biofeedback in- ⫹ p ⫽ .002c III
strument
ROM (heel strike) I Biofeedback in- ⫹ yes III
strument
29 Motor age I Bayley Motor Sc. ⫺ p⬍ .01 I
Physiological function I Neurological exam ⫺ p⬍ .05 I
ROM (jt. limitation) I Bracing recom. U NS I
ROM (contractures) I Surgery recom. U NS I
Walking FL/A Attained milestone ⫺ yes p⫽ .01 I

Butler
Mental age I Bayley Mental Sc. ⫺ p⫽ .3 I
Social age I Vineland SM Sc. ⫺ p⫽ .54 I
30 Activity I CITQ ⫺ NS I
Rhythmicity I CITQ ⫹ NS I
Adaptability I CITQ ⫺ NS I

Treatment Outcomes
Approach I CITQ ⫹ NS I
Threshold I CITQ U NS I
Intensity I CITQ ⫹ NS I
Mood I CITQ U NS I
Distractibility I CITQ ⫹ NS I
Persistence I CITQ ⫹ NS I
Maternal acceptance SL/C RMCRC ⫺ NS I
Mater. overprotect. SL/C RMCRC ⫹ NS I
Mater. over indulgen. SL/C RMCRC ⫹ NS I
Mat. rejection SL/C RMCRC ⫺ NS I
Mat. responsiveness SL/C HOME ⫹ no p ⬍ .04 I
Restriction avoidance SL/C HOME ⫹ NS I
Envir. organization SL/C HOME ⫹ NS I
Play materials SL/C HOME ⫹ NS I
Mat. involvement SL/C HOME ⫹ NS I
Variety stimulation SL/C HOME ⫹ NS I
c
31 Physiological function I Rate movements U II
32 ROM (knee flexion) I Goniometer and ⫹ c
II
videography
33 Fine motor age I Peabody FM Scale ⫺ no p ⫽ .63
Physiological hand I QUEST U no p ⫽ .82
function
34 Fine motor age I Peabody FM Scale U no NS I
Physiological UE I QUEST U no NS I
funct
Hand activities FL/A COPM U no NS I
Parent satisfaction SL/C Rating scale U no NS I
a
Denver Developmental Screening Test.

307
b
Results of Rx group compared to aggregated control groups.
c
Trend and level analysis.
COPM ⫽ Canadian Occupational Performance Measure; QUEST ⫽ Quality of upper extremity skills scale; U ⫽ unchanged; NS ⫽ Not statistically signifi-
cant; LOE ⫽ Level of evidence; Clin Imp ⫽ Clinical importance; Dim. ⫽ Dimension of disablement.
Table 7 State of Knowledge About Outcomes of Treatment with NDT for Youngster with Cerebral Palsy

Section 1. Outcomes of treatment compared with another condition or of greater versus lesser intensity NDT.

308
The evidence about each outcome is indicated by its level of evidence code (I through V) in the appropriate column showing: positive
and statistically valid outocmes (⫹ *), positive (⫹) or negative (⫺) results that were not subjected to statistical evaluation, or results
that were unchanged, and/or were not statistically significant (U and NS ). References to the study that produced the outcome are in
parentheses. Outcomes of more intense NDT are shown in italics. For example, only one measure (of five) in one study (of five)
detected improved physiological motor responses as a result of NDT. This measure, though Level II evidence, was not subjected to
statistical evaluation. Three measures from Level I or II studies, subjected to statistical evaluation, found the group exposed to NDT
was not different or less improved than the comparison group not receiving NDT. Two measures (Level I evidence) evaluating the
effects of increased intensity of NDT also produced no statistically significant difference.

Outcome ⫹* ⫹ ⫺* U and NS

Pathophysiology
Impairment Physiological motor re- II(25) I(29) II(31) I(34) I(33)
sponses
Reflexes II(23) II(26)
Range of motion III(28) III(28) II(32) II(23) II(26) I(29) I(29)
Motor age II(24) I(29)
Gross motor age II(24) II(26)
Fine motor age II(24) I(34) I(33)
Social age II(24) I(29)
Mental age I(29)
Language age II(24)
Activity I(30)
Rhythmicity I(30)
Adaptability I(30)
Approach I(30)
Threshold I(30)

Butler
Intensity I(30)
Mood I(30)
Distractibility I(30)
Persistence I(30)
 Treatment Outcomes
Functional limitation: Gross motor acts II(23), III(27)
Activity
Walking I(29)
Hand activities I(34)
Social acts II(25)
Disability/participation
Societal limitation/ Home management II(25)
Context
M. acceptance I(30)
M. overprotection I(30)
M. overindulgence I(30)
M. rejection I(30)
M. responsiveness I(30)
M. involvement I(30)
M. restrictions I(30)
Environment I(30)
Play materials I(30)
Variety stimulation I(30)
Parent satisfaction I(34)

M. ⫽ maternal.

309
310 Butler

Table 8 Determinants of Change Other than Intervention

Factors subjected to analysis Statistically significant (Ref.)

Mental development or intelligence no(23)

no(33)
yes(25)
Age no(25)
no(26)
yes(33)
Severity of disability no(25)
Maternal education level no(33)
Family income no(33)
Parental compliance with home program yes(33)

verity of disability, maternal education, or family income and outcome of expo-

sure to NDT.

E. Analyzing the Evidence Tables

1. What Evidence Is There About the Effects of NDT on Motor
Impairment or Impairment in Other Domains of
Development?
There are 34 outcomes related to impairment. Of these, 26 results showed no
difference between the NDT and control groups; six results favored NDT, two
results favored the control condition.

(a) Motor Response. Benefit of NDT on physiological motor function

(including reflex activity) has been measured seven times: benefit was found only
once; six measures detected no benefit over the control condition. Specifically,
one study found greater improvement in the group that got NDT on an aggregate
measure of physiological motor response (25); however, in another study that
used a similar aggregate measure, greater improvement was found in the control
group (29). The finding that was in favor of NDT was not statistically significant
and was produced by a less rigorous study than the one that produced the negative
finding for NDT. Two measures each of primitive and mature reflex activity and
quality of upper extremity movement, and one measure that combined postural
tone, weight shift and bearing, and transitional movement were not statistically
significant when scores of the NDT groups were compared with the control
groups.
Treatment Outcomes 311

(b) Range of Motion. Three of these seven measures suggest that there
may be some immediate effects of NDT on dynamic range of motion. Improved
heel strike and ankle dorsiflexion as well as reduction of excessive knee flexion
were measured immediately following therapy sessions. Otherwise, the measures
detected no difference between the NDT and control groups on joint limitation,
contractures, range of hip abduction and ankle dorsiflexion, and on an aggregate
measure at several joints.
(c) Motor Development. Normative tests of child development inform
about the general degree of impairment in various domains of development
through a standardized score, usually a motor, mental, language, or social age
(or quotient). There were seven outcomes in which a motor age (gross motor
age, fine motor age, or overall motor age) was calculated. Five measures suggest
that NDT did not accelerate motor development. In contrast, the two measures
that suggest that motor development in the NDT group was accelerated were
made in the same group of 12 children.
(d) Other Domains of Child Development and Function. Two measures
of social age and one measure each of mental age and language age found no
difference between the group that received the NDT and the control group. There
were also nine measures of emotional function (i.e., various aspects of infant
temperament); none showed results for the NDT group that were significantly
different from the control group.
(e) Quantity of Therapy. Two studies evaluated whether more intensive
intervention (twice a week plus a home program) compared to a less intensive
intervention (once a week or less) would demonstrate greater gains in measures
of impairment. (33, 34). Two other studies evaluated outcomes at 6 and again
at 12 months to learn whether therapy over a longer period of time would demon-
strate greater gains in measures of impairment (23, 29). No beneficial effect of
increasing either the intensity of therapy or increasing the period of therapy over
time was detected by these studies.

2. What Evidence Is There About the Effects of NDT in

Dimensions of Disablement Other than Impairment?

(a) Pathophysiology. There is no evidence regarding changes in cellular

or molecular structure or function in individuals as a result of NDT during early
childhood.
(b) Functional Limitation/Activity. Unlike the normative tests in the im-
pairment dimension that sample selected activities to yield a comparative devel-
opmental domain age or quotient (i.e., motor age or intellectual quotient), this
dimension is concerned with quantitative description of the performance of activi-
312 Butler

ties such as walking, dressing, playing, or interacting with other people. Four of
the five activities that were measured were concerned with motor performance;
one, with social skills. Neither gross nor fine motor activities improved as a result
of NDT. In other developmental domains, one study reported that infants dis-
played more social skills but did not specify what these skills were.
(c) Disability/Participation. Effects of NDT on participation in social
roles have also not been investigated.
(d) Societal Limitation/Context Factors. It has been hypothesized that
NDT may have indirect benefits for the child by improving the parent–child
relationship or by reducing the stress parents experience in caring for a child
with atypical motor function. Ten of 12 measures reject this hypothesis. With
one exception, measures of mother–child interaction revealed no difference in
the outcomes of the mothers whose children received NDT versus mothers whose
children did not. Only maternal responsiveness to the child improved as reflected
in higher and statistically significant scores for mothers of the NDT group. Four
measures detected no difference in the children’s environment as a result of chil-
dren receiving NDT. Parent satisfaction was no higher for parents whose children
were in NDT. There was a positive finding for NDT in a questionnaire probing
changes in home management; however, this was statistically evaluated.

3. What Linkages Exist for Treatment Effects Within and

Across These Dimensions of Disablement and in Which
Directions?
None can be detected for two reasons. Relatively few measures (9 out of 51)
detected a treatment effect for NDT. Treatment effects detected were primarily
in the impairment dimension (6 of 9); data of effects outside the dimension of
impairment are so limited analysis of linkages of effects across dimensions is
not possible.

4. Are There Subgroups for Whom NDT May Be More or Less

Effective?
Four of the studies analyzed the relationship between various factors and out-
comes of exposure to NDT to identify subgroups of children more or less likely
to profit from NDT (see Table 8). Three studies analyzed age as a variable, but
it was statistically significant in only one of the studies. The effect of intelligence
was analyzed in three studies; it, too, was statistically significant in only one of
the studies. One analysis each of severity of disability, maternal education, and
family income failed to identify any subgroups. One measure of parental compli-
ance with the home program suggests that only children whose parents follow
through with the prescribed treatment are more likely to improve.
Treatment Outcomes 313

5. What Kinds and Magnitude of Complications Have Been

Documented?
None.

6. What Is the Strength of the Evidence?

Credibility of the evidence depends on several factors: how extensively the popu-
lation has been sampled (number of different studies and number of subjects),
consistency of results across the studies, and robustness of the research methods
used. This body of evidence is relatively limited with regard to the population
that has been sampled: 12 studies (two with the same population sample) with
a total of 231 different children. On the other hand, it is a fairly robust body of
evidence in regard to internal validity: four Level I studies, six Level II studies,
and one Level III and IV. Moreover, the outcomes are generally consistent; only
9 of 51 are positive for NDT and these were generally not of clinical importance.
Some other determinants of change (age, intelligence, etc.) have also been exam-
ined but not consistently found to be factors that could account for the observed
outcomes when youngsters have been exposed to NDT.

F. Discussion
The tenets of NDT theory have not been supported by current evidence. There
is little evidence that it changes abnormal reflexes, muscle tone, or movement
patterns, or that it facilitates either more normal motor development or functional
movement activities. More intensive therapy has not conferred a greater benefit.
The evidence also has not been able to demonstrate other benefits to children in
social-emotional, language, or cognitive domains of development, or in improved
parent–child interactions or in better home environments. These conclusions are
bolstered by a meta-analysis study of the effectiveness of pediatric therapy, which
revealed that NDT effects were detectable with meta-analysis techniques, but that
overall treatment effects were small (35).
While these findings are disappointing, this evidence cannot be construed
as negative evidence. There are four circumstances that interfere with the ability
to detect an intervention effect and make it impossible to draw any definitive
conclusions about NDT at this time. These problematic issues are: (1) lack of an
operational definition of NDT; (2) lack of known power in the sample sizes to
detect effects, had there been effects; (3) the hetergeneous characteristics of the
subjects; and (4) lack of valid and reliable outcome measures with which to detect
an intervention effect. In addition, we still lack adequate data to indicate whether
age, severity of involvement, or other factors influence the effect of NDT.
It is easy to be discouraged by this review. However, given their long-
standing commitment to youngsters with cerebral palsy, physical and occupa-
314 Butler

tional therapists should view these findings as a call both to more systematic and
robust evaluation of the effects of NDT and to the exploration of intervention
strategies based on other theoretical models of motor development.
At the same time, the information in this review may allay some anxieties,
reduce some conflicts in professional emphasis, and suggest avenues that may
prove to be more productive for improving the lives of children with cerebral
palsy and their families. These findings may alleviate some of the anxiety that
parents, therapists, and other clinicians have felt about children not getting as
much NDT therapy as they believed was needed.
These findings may also reduce conflicts between educators and therapists
whose interventions derived from different theoretical models (i.e., theories of
cognitive and social-emotional development versus the motor theory on which
NDT is based). The crux of that professional dilemma has been that NDT, de-
signed to enhance the child’s later physical status, may have a secondary deleteri-
ous effect upon the child’s subsequent intellectual and psychosocial development
as a result of the restrictions the therapy may place on the child’s preferred move-
ment patterns and resultant sensorimotor experiences (36–38). For example, ac-
cording to cognitive theory, interaction with the environment is necessary for
maximal cognitive development during early childhood. Consequently, young-
sters with cerebral palsy who are not encouraged or allowed to use their preferred,
albeit abnormal, patterns of movement to position themselves and manipulate
objects in the environment may miss out on critical sensorimotor experiences.
Likewise, children whose therapeutic experience is focused exclusively on NDT
and who are not allowed to use assistive technology to by-pass their motor impair-
ments miss important opportunities for learning and exploring. On the other hand,
very young children who use powered devices that allow self-controlled locomo-
tion, electronic communication devices that allow interaction with people, and
environmental control devices that activate a variety of objects and toys, can
participate in sensorimotor experiences in the normal developmental timetable —
and develop a sense of competence and confidence in themselves while they
explore their environment and learn.

IV. REVIEW OF THE EFFECTS OF EARLY INTERVENTION

WITH PHYSICAL THERAPY FOR INFANTS ‘‘AT RISK’’
FOR CEREBRAL PALSY
A. What Is Early Intervention?
Early intervention programs were first implemented in the 1960s in the United
States in its ‘‘war on poverty.’’ Their purpose was to alter the cognitive develop-
mental trajectories of socially vulnerable children (i.e., to counter the effects of
poverty and other frequently coexisting risk factors such as low birth weight,
Treatment Outcomes 315

low parental education, and family stress) on cognitive development in children

(39, 40). Children born prematurely and with low birth weight are also biologi-
cally vulnerable. Such infants are disproportionately likely to have major neuro-
developmental deficits, including cerebral palsy. Thus, early intervention has had
two meanings. It refers to (1) programs intended to reduce potential cognitive
impairment in infants at risk socially and (2) programs intended to reduce poten-
tial motor impairment in infants at risk biologically.
For purposes of this review, early intervention is defined as the early initia-
tion of a formal program of physical therapy for infants who are likely to manifest
permanent neurological sequelae with motor dysfunction as they develop. This
likelihood or risk is calculated on the basis of abnormal birth history (e.g., prema-
ture birth, low birth weight, birth asphyxia, low Apgar score at birth) and on
various neonatal risk findings after birth (e.g., seizures; abnormal ultrasound
scans, computer tomography scans, or EEG tracing during newborn period; ab-
normal tone or patterns of movement; abnormal persistence of primitive reflexes).

B. Intervention and Timing

Because of the complex developmental nature of cerebral palsy, its diagnosis
cannot be made with certainty until motor delay and abnormal motor patterns
are well established and other diagnoses ruled out. Except in severe cases, diagno-
sis of cerebral palsy is often delayed until age 2 or after, when the classic signs
of cerebral palsy have become pronounced.
Nevertheless, operating from the neuromaturational premise that the imma-
ture nervous system is more adaptable to change and can be more readily influ-
enced than the mature nervous system, it has been thought that intervention begun
as early as possible in a child’s life will be more beneficial than intervention
begun later. Thus, Bobath argued that treatment started before the age of 9 months
will give quicker and better results (16). She cited several reasons: the adaptabil-
ity and plasticity of infantile brain; importance of normal sensorimotor learning;
possible mental retardation secondary to sensorimotor deprivation; abnormal pos-
tural reflex activity, spasticity and athetosis that grows stronger over time; and
opportunity to prevent development of contractures and deformities. Vojta
claimed that early intervention may even prevent cerebral palsy. Specifically, he
alleged that his method of very early therapy prevents ‘‘uncomplicated’’ cerebral
palsy (41). By Vojta’s definition, ‘‘uncomplicated’’ type of cerebral palsy is mo-
tor impairment that is not combined with severe mental retardation and/or severe
convulsive disorders. On the basis of these assertions or on the basis of neuroma-
turational theory in general, many therapists and physicians have supported the
initiation of therapy as early and as intensively as possible to minimize future
handicaps (42). In fact, it has often been presented that early intervention is abso-
lutely essential and that failure to attend therapy sessions and/or administer the
316 Butler

recommended home program will compromise the child’s future development

(43).
Research shows that the predictive validity of early diagnostic signs, while
useful, is not perfect. Follow-up studies demonstrate that a greater percentage of
high-risk infants do develop cerebral palsy, but many high-risk infants do not.
Early differentiation of those infants who will have permanent neurological se-
quelae from those who will not continues to be difficult.
Clinicians, therefore, face the problem of how to use the information that
an infant is at ‘‘high risk.’’ One response has been to warn parents about the
possibility their infant may have developmental problems, follow the child
closely after discharge, and introduce physical therapy only if signs of abnormal
muscle tone or motor function develop. Another response is to initiate therapy
immediately and discontinue it only after normal motor development has mani-
fested. Today, on the basis of one or more indices of risk factors, even newborns
are identified as ‘‘at risk’’ for motor impairment and frequently placed in a physi-
cal therapy program.
In addition to potential effect on domains of child development, early physi-
cal therapy programs may also offer parental support, foster parent/child relation-
ships, and diminish parental anxiety. Conversely, these programs are demanding
both for the infant and for the parent (44). They usually require regular attendance
at a clinic for therapy combined with a home program that parents carry out.
Many parents are unable to comply fully because it is stressful and time consum-
ing to master and maintain the treatment recommendations (22). Participation in
a rigorous intervention program may disrupt family functioning, involve high
cost, deflect scarce resources of time, energy, and money exclusively to this enter-
prise, and even create feelings of guilt in the parents. In addition, from a societal
point of view, financial cost associated with early intervention for high-risk in-
fants, some of whom will develop normally without intervention, can be signifi-
cant.
Is the enthusiasm for early intervention with physical therapy that has pre-
vailed in the past 20 years justified by empirical research? Does early intervention
affect motor outcome? Are there other important effects? Do the benefits derived
from this early intervention warrant the time and effort expended by parent and
child as well as the financial cost?

C. Search Results
The MeSH terms ‘‘perinatal risk,’’ ‘‘early intervention,’’ ‘‘physical therapy,’’
and ‘‘developmental outcome’’ were used with ‘‘cerebral palsy,’’ ‘‘infants,’’ and
‘‘preschool children’’ to search in Clinical Queries of MEDLINE. Relevant arti-
cles were obtained. References in these articles to identify studies missed by
Treatment Outcomes 317

electronic searching and knowledgable researchers were consulted. Examination

of the article references yielded another six citations for full-text article review.
Fourteen full-text articles were obtained and reviewed. Studies were excluded if
some of their subjects had already been diagnosed with cerebral palsy at the
outset of the study. Ten relevant studies were found.

D. Review of Studies
The ten studies of impact of early intervention with physical therapy on the pre-
vention or minimization of future handicaps are described briefly in the following
section and are summarized in Tables 9–10.
The first study, a description of a case series of at-risk infants said to have
early signs of cerebral palsy, was highly encouraging (45). In 1966, it was re-
ported that 77% of such children who had had 1 to 4 years of the Bobath method
of physical therapy or NDT (clinic sessions plus home program) that began in
the first year of life showed almost complete ‘‘normalization’’ of motor function
and no longer required treatment. Cerebral palsy was diagnosed in only 23% of
the children, and they remained in therapy.
The purpose of a 1980 study was to examine whether early Vojta physical
therapy in infants with abnormal reflexes prevented the development of uncom-
plicated cerebral palsy or, conversely, produced normal motor development, as
claimed by Vojta (44). The Vojta method of physical therapy was compared with
a control group of children, some of whom got no treatment and some of whom
got NDT because their parents were unwilling to accept no treatment at all. There
was no difference between the groups in the number of infants who subsequently
were found to have normal motor development. On the other hand, no infants
with Vojta treatment developed uncomplicated CP compared to four who did in
the control group; this was not a statistically significant difference, however.
Another study of Vojta physical therapy appeared the following year. The
intent was to compare two forms of motor therapy against each other and to a
third control group (41). Children were randomly assigned to participate in a trial
of Vojta treatment or a trial of NDT. However, failure to stratify by risk factors
of greater severity before randomization resulted in the NDT group being dispro-
portionately and heavily weighted with infants who had risk factors of greater
severity (5 out of 6 compared to 5 out of 9 in the Vojta group). This poses a
serious threat to the credibility of comparing outcomes of NDT therapy, so the
NDT subjects and its data are excluded herein. The control group did not partici-
pate in the random allocation; they were exposed to an intervention described
only as a ‘‘less strictly performed and combined form of physiotherapy.’’ Al-
though 30% more infants in the Vojta-treated grouped turned out to have normal
motor development compared to the control group, there was no difference be-
tween the groups in the percentage of cases of uncomplicated CP.
318 Butler

A third study of Vojta physical therapy was published in 1983 in which a

group of 67 infants at high risk for motor impairment had been treated by the
Vojta method (46). The publication reported a case series of 713 children, but
only 67 were at high risk for motor impairment and were known to have received
this motor intervention. Others received no therapy at all or an alternative therapy;
still others had no signs of cerebral coordination disturbance (CCD) or light-to-
moderate signs. Thus, only the 67 subjects in the Vojta group and their outcomes
are reported herein. Retrospectively, the 713 children were stratified by the sever-
ity of CCD signs in the initial examination shown by the medical records, so
that outcomes data for the infants most likely to develop cerebral palsy can be
examined. Although it is only uncomplicated cerebral palsy that Vojta claims can
be prevented, this study did not differentiate complicated versus uncomplicated
cerebral palsy. The rate of diagnosis of cerebral palsy was 85% in the 67 children;
only 7% of them eventually were found to have normal motor function.
In 1985, 3-month-old graduates from a neonatal intensive care unit who
scored as neurologically normal and who scored as neurologically at risk were
alternately assigned to a treatment versus a no treatment group, forming four
groups to be followed up for a year (47). The developmental quotient of these
infants was assessed every 3 months. In neither normal nor at-risk groups did
NDT alter the pattern or outcome of overall development.
Five years later, the foregoing subjects were followed up to ascertain
whether long-term treatment effects of the early intervention were detectable (43).
Of the original 80 children, 49 were available for reassessment. The develop-
mental quotient showed improvement from the 1-year assessment and was similar
for both normal and at-risk children. Such improvement, however, appeared to
occur naturally and was unaffected by early physical therapy or any subsequent
intervention.
A randomized, controlled trial the following year evaluated the impact of
early NDT on at-risk infants identified on the basis of low birth weight or adverse
birth history (48). The experimental group received physical therapy and a home
program carried out by parents for a year; the control group continued in the
regular neonatal follow-up of periodic clinic visits. Independent evaluators who
were blind to the interventions assessed the children on several developmental
and neuromotor measures. Findings failed to provide evidence that early physical
therapy as applied in this trial either prevents neuromotor dysfunction or pro-
motes motor development in at-risk infants. Additional analyses of 14 potential
determinants of change did not identify effects of treatment in selective groups
of experimental children.
Two studies, both published in 1996, tested the hypothesis that the early
introduction of physical therapy for children who later developed CP would result
in the promotion and acceleration of motor development compared to an approach
Treatment Outcomes 319

in which physical therapy is delayed until abnormal neurological signs become

apparent.
One of these studies investigated the sensorimotor type of therapy instituted
early versus later. The early-start (experimental) group got physical therapy and
a home program from age 3 months until their first birthday (49). Delayed-start
children began physical therapy sessions only when (and if) they began to demon-
strate motor delay. Although cost analyses revealed that the early intervention
was almost twice as expensive as the delayed start intervention, annual compre-
hensive assessments up to age 7 revealed no significant differences in develop-
mental outcomes based on age of start. Anecdotally, one family reported that the
involvement of interventionists in the first year, before the family stabilized and
got to know their child well, was intrusive rather than helpful.
The other study compared NDT therapy for premature infants, started early
versus waiting for abnormal signs to manifest (50). There were no significant
differences on a global measure of development, nor on the individual normative
subscales at 12 or at 30 months. By 30 months, 45 infants in the early therapy
group had developed cerebral palsy compared with 24 in the later therapy group.
The subgroup with cerebral palsy in the two groups was further analyzed to deter-
mine whether motor development coincident with cerebral palsy had been en-
hanced by early physical therapy. However, early treatment did not confer a bene-
fit to children with cerebral palsy either in their overall developmental quotient,
their locomotor developmental quotient, independent walking, or in development
of orthopedic deformities that precipitated surgery.
The final study found that the prevalence of maternal depression was no
different for mothers whose premature infants were considered at risk for devel-
oping cerebral palsy, compared to mothers of premies not considered at risk, and
compared to mothers of healthy full-term infants (51). Of interest to this review
of early intervention was the testing of a further hypothesis (i.e., that the rates
of depression in mothers whose at risk infants received early physical therapy
intervention would be lower than for mothers whose infants were not offered
intervention until impaired neurodevelopment manifested). The proportion of
mothers who were depressed at 6 weeks, 6 months, and 12 months was higher
in the group whose infants were receiving early intervention than in the group
whose infants got later intervention. This difference was not statistically signifi-
cant, however.

E. Evidence Table
A cursory examination of Table 11 shows that most measures have investigated
effect of early physical or motor therapy in the dimension of impairment. The
Table 9 Summary of Studies

320
Section 1. Intervention and subjects.

Study (Ref.) Rx Control Subject sample #Total Ages

45 NDT ⬃ Motor risk Dx 69 ⬍1 yr.
44 Vojta Mixed: no Rx & NDT Early signs cerebral coordi- 51 4–7 mo.
nation disturbance
(CCD): Vojta criteria
41 Vojta a
Early signs CCD: Vojta 18 ⬍6 mo.
criteria
46 Vojta Severe CCD and sus- 67 ⬍9 mo.
pected CP: Vojta crit-
eria
47 NDT No Rx VLBW infants from 80 3 mo. CA
NICU
43 NDT No Rx Same subjects as Good- 49 6 yr.
man study
48 NDT No Rx LBW infants and/or ad- 134 40 wk. Con. A
verse birth history
49 Earlyb PT Later b PT Medically fragile NICU in- 65 3 mo.
fants (IVH or LBW)
50 Earlyb PT Later b PT Analysis 1: Premies with 83 36–41 wk.
abnormal cranial ultra-
sound scans
Analysis 2: Infants who 45
developed CP
51 Earlyb PT Laterb PT Mothers of infants in early 30

Butler
versus late NDT treat-
ment
 Treatment Outcomes
Section 2. Research Methodology

# in Rx # in Control
Study (Ref.) Research Design and Level of Evidence Duration Group group

45 Retrospective case series without controls, Level V 1–4 yr. 69 0

44 Cohort study with historical control group, Level III 3 yr. 21 30
41 Cohort study with concurrent control group, Level III 4 yr. 10 8
46 Retrospective case series without controls, Level V 1–4 yr. 67 0
47 Treatment outcomes analytic survey, Level II 1 yr.
Normal babies (i.e., low NDS) 20 20
At risk babies (i.e., high NDS) 20 20
43 Treatment outcomes analytic survey, Level III 5 yr.
Normal babies (i.e., low NDS) 13 12
At risk babies (i.e., high NDS) 15 9
48 Randomized controlled trial, Level I 12 mo. 56 59
49 Randomized controlled trial, Level II 7 yr.
50 Randomized controlled trial, Level I 30 mo.
Analysis 1: High-risk infants 42 41
Analysis 2: Infants that developed CP 23 22
51 Cohort study with concurrent control group, Level II 30 mo. 16 14
a
‘‘A less strictly performed and combined form of therapy.’’
b
Physical therapy started at release from NICU (early) vs. started (later) after Dx of motor delay (later).
LBW or VLBW ⫽ low birth weight or very low birth weight; NICU ⫽ Neonatal intensive care unit; IVH ⫽ Intraventricular hemorrhage; CA ⫽ corrected
age; Con A ⫽ Conceptual age; NDS ⫽ Neurodevelopmental scores.

321
 322
Table 10 Summary of Results

Section 1. Results of treatment compared to another intervention.

Clin. Inferential
Study (Ref.) Outcome Dim. Measure Result Imp. Statistics LOE

44 Uncomplicated CP I Rate of uncomplicated ⫹ yes NS III

CP Dx
Normal motor dev. I Rate of normal motor Dx U no NS III
41 Uncomplicated CP I Rate of uncomplicated U no NS III
CP Dx
Normal motor dev. I Rate of normal motor Dx ⫹ yes III
47a DQ I Griffiths MD Scale U no NS II
43 DQa I Griffiths MD Sc. 2 ⫺ no NS III
CPb I Rate of CP Dx U no NS III
48 Gross motor activities FL/A Wolanski GM Eval U no NS I
Physiological motor I Milani-Comparetti U no NS I
Physiological motor I Wilson DR Profile ⫺ no NS I
DQ I Griffiths MD Scale ⫺ no NS I
Normal motor dev I Rate of Dx ⫺ no NS I
Abnormal motor dev. I Rate of Dx ⫺ no NS I
49 Financial cost SL/C Cost analysis ⫺ yes II
DQ I Battelle Dev. Inv. NS II
IQ I Stanford-Binet NS II
Independent beh. age I Sc. of Indep. Beh. NS II
Academic ach. age I W-J-R NS II
Social age I Social Skill Rating NS II

Butler
Emotional states I CBCL NS II
Stress on child I Parent Stress Indx NS II
 Treatment Outcomes
50 Analysis 1:
DQ I Griffiths MD Scale U no p ⫽ .7 I
CP I Limb by Limb. Ass. U no I
Analysis 2:
DQ I Griffiths MD Scale NS I
Locomotor dev. I Griffiths Loc subsc ⫺ no NS I
age
Independent FL/A ⫺ no p ⫽ .75 I
walking
Ortho. deformity I Rate of ortho surg U no I
51 Maternal depression I Malaise inventory ⫺ yes p ⫽ .63 II
a
Results of treated at-risk group compared to untreated at-risk group plus treated and untreated normal groups.
b
Results of treated at-risk group compared to untreated at-risk group.
DQ ⫽ development quotient; AE ⫽ Age equivalent; W-J-R ⫽ Woodcock Johnson Revised Test of Academic Achievement; CBCL ⫽ Child Behavior
Checklist; U ⫽ unchanged; NS ⫽ Not statistically significant; LOE ⫽ Level of evidence; Clin Imp. ⫽ Clinically important; Dim. ⫽ Dimension of disablement.

Section 2. Uniformity of results within treatment groups: rates of normal motor development and development of cerebral palsy.

Study (Ref.) Cerebral palsy Normal motor dev.

45 (n ⫽ 69) 23% 77%

44 (n ⫽ 21) 24%
46 (n ⫽ 67) 85% 7%
50 (n ⫽ 42) 55%

323
 324
Table 11 State of Knowledge About Outcomes of Early Intervention with Physical Therapy (Outcomes of early treatment compared
with no treatment or delayed treatment.)
The evidence about each outcome is indicated by its level of evidence code (I through V) in the appropriate column showing: positive and
statistically significant results (⫹ *) or negative (⫺ *), positive (⫹) or negative (⫺) results that were not subjected to statistical evaluation, or
results that were not different and/or were not statistically significant (U and NS). References to the study that produced the outcome are in
parentheses. For example, six measures of developmental quotient made in five studies have found no statistical difference in favor of infants
receiving early intervention; these findings represent Level I, II, and III evidence about effect on overall development.
Outcome ⫹* ⫹ ⫺* U or NS
Pathophysiology
Impairment Uncomplicated CP III(44) III(41)
CP III(43) I(50)
Abnormal motor dev. I(48)
Normal motor dev. III(41) III(44) I(48)
Locomotor development I(50)
Physiological motor function I(48) I(48)
Orthopedic deformity I(50)
Developmental quotient II(47) I(48) III(43) II(49) I(50) I(50)
IQ II(49)
Academic achiev. age II(49)
Indep. behavior age II(49)
Social age II(49)
Emotional states II(49)
Stress on child II(49)
Functional limitation/ Gross motor activities I(48)
Activity
Independent walking I(50)
Disability/participation
Societal limitation/ Financial cost II(49)

Butler
Context
Maternal depression II(51)
Treatment Outcomes 325

preponderance of evidence shows no difference as a result of early intervention

in this or any dimension.

F. Analyzing the Evidence

1. What Evidence Exists About the Effects of Early
Intervention on Domains of Child Development?
The results are remarkably consistent across a variety of measures that have been
used. Only one measure supported any benefit of early motor therapy, and it was
not evaluated for its statistical validity. The rates of normal motor development
or minimal residual motor disability (or conversely, cerebral palsy) were reported
in four studies (44–46, 50). When rates of CP, abnormal motor development, or
normal motor development were compared with the rates in control groups of
children (41, 43, 44, 50), the rates were not lower in groups exposed to early
intervention nor were rates of normal motor diagnosis higher. Motor develop-
ment, as reflected by motor quotients or ages or physiological motor function
appeared to be unaffected by early intervention. No effects in other develop-
mental domains were detected.

2. What Evidence Exists for Effects in Other Dimensions of

Disablement?
Only two measures have been made in each of two other dimensions.
(a) Pathophysiology. None.
(b) Functional Limitation/Activity. One measure of activities of a gross
motor nature found no significant difference for the group with early intervention.
(c) Disability/Participation. None.
(d) Societal Limitation/Context Factors. If early intervention had no di-
rect remedial value for the child as shown by the measures of impairment or
activity, did it work to help families cope with the possibility of their infants
developing cerebral palsy? One study investigating rates of maternal depression
found that the proportion of mothers who were depressed was actually higher in
the group receiving early intervention than in the group receiving intervention
only after cerebral palsy manifested. However, there was not a statistical differ-
ence between these groups of mothers. The only other bit of evidence about
families is an anecdote that also suggests early intervention is not necessarily
supportive to parents (49). It was reported that the involvement of interventionists
in the life, schedule, and home of the family in the first year was felt to be
intrusive. Time to get to know their child and stabilize the family was said to
be important before ‘‘outsiders’’ entered the picture. Finally, in this dimension,
326 Butler

the cost of early intervention was found to be double the cost of intervening after
cerebral palsy has been diagnosed; thus, this is a negative outcome.

3. What Linkages Exist for Treatment Effects Within and

Between These Dimensions and in Which Directions?
None.

4. Are There Subgroups for Whom Early Intervention is More

or Less Effective?
Three studies attempted to identify subgroups of experimental children through
statistical analysis of interaction effects (43, 48, 49). Their analyses showed that,
regardless of group assignment, long-term developmental outcomes were better
for infants who did not have (1) very low birth weight (⬎750 g); (2) medical
complications at birth (especially intraventricular hemorrhage); or (3) low socio-
economic status (especially low maternal education).

5. What Kinds and Magnitude of Complications Have Been

Reported?
None.

6. What Is the Strength of the Evidence?

Ten studies provide results from a total of 616 children and 30 mothers. Two
case series without controls contributed information about rates of cerebral palsy
and normal motor development in groups exposed to early intervention (45, 46);
however, all other studies employed control groups. The greatest strength of this
body of evidence is the consistency of its results. The outcomes are also credible
in that 12 of the 25 results are Level I evidence and 10 are Level II evidence.
Thus, the body of evidence is relatively definitive; its greatest weakness is the
relatively small number of subjects on which it is based.

G. Discussion
The first description, in 1966, of a series of at-risk infants who had received
physical therapy in the first year of life raised hope that early intervention would
either prevent neuromotor dysfunction or promote more normal motor develop-
ment. No subsequent study has been able to demonstrate statistical evidence to
support that hope for NDT, Votja, or any other form of physical therapy that has
been studied. There is relatively strong evidence that very early physical therapy
yields neither short-term nor long-term effect on motor development or on other
domains of child development. Even children considered to be at risk at one year
Treatment Outcomes 327

of age showed improvement over the next five years; such improvement seemed
to occur naturally and was unaffected by early physical therapy (43). There is
surprising, though quite limited, evidence that early intervention may not neces-
sarily be supportive to families either.
Certainly this evidence challenges any recommendation that early physical
therapy for at-risk infants is essential and that failure to attend clinics and/or
administer the home program will compromise the child’s future development.
The cost estimates underscore an economic imperative that is particularly com-
pelling in the absence of measurable clinical difference. The evidence suggests
that a ‘‘wait and see’’ approach to treatment is preferable. The skills of physical
therapists are needed for the on-going assessment of those children initially iden-
tified as high risk and for management of cerebral palsy after its diagnosis.

V. SUMMARY

This chapter has demonstrated that evidence tables constructed on the AACPDM
framework can consolidate evidence for specific as well as diffuse types of inter-
ventions. Assessment of factors to determine the levels of evidence of a study,
as well as the dimensions of disablement represented by the results, tends to be
a relatively subjective enterprise. Thus, a review itself is subject to bias. This bias
can be partially overcome by adhering to the guidelines set out in the AACPDM
methodology for conducting systematic reviews. It can be further overcome by
agreement on coding of results and their interpretation by a group of reviewers
rather than an individual reviewer. Despite this limitation, however, the concept
of systematic reviews of evidence is a useful one and, indeed, is the cornerstone
of evidence-based health care.
Use of this particular format for organizing the evidence about interventions
can have many additional benefits for the field of developmental disabilities. With
such a tool, consensus can be reached about the dimensions for which there is
evidence of efficacy in each intervention. Meaningful comparisons between inter-
ventions can eventually be made. The dimensions for which adequate information
is lacking can be visualized and will invite future research to address the gaps in
our knowledge. Use of the model will prompt the research community to include
multiple outcome measures in study protocols so that existence of linkage of
effects across dimensions can be determined. It will help professionals and clients
alike to recognize that recommendations may be seen, not as conflicting, but
rather as complementary by showing how different interventions can have effects
in different levels. This can help clients make informed decisions about treatment
options based on what the treatment offers and how that relates to their own
values. It can lead us all to think about intervention differently (i.e., that an indi-
vidual child may best be served at a particular point by altering the environment
328 Butler

rather than attempting to change the child’s impairment or by considering

whether the disability of social isolation may be caused by depression rather than
limited mobility). Finally, it will serve to remind each of us that as individuals
in our communities we have the opportunity to reduce further the burden of dis-
ability in the dimension of societal limitation by efforts to initiate and support
actions to remove all barriers to full participation in society of people with disabil-
ities.

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32. Embrey D, Yates L, Mott D. Effects of neuro-developmental treatment and orthoses
on knee flexion during gait: a single-subject design. Phys Ther 1990; 70:626–637.
33. Law M, Cadman D, Rosenbaum P, Walter S, Russell D, DeMatteo C. Neurodevelop-
mental therapy and upper-extremity inhibitive casting for children with cerebral
palsy [see comments]. Dev Med Child Neurol 1991; 33:379-87.
34. Law M, Russell D, Pollock N, Rosenbaum P, Walter S, King G. A comparison of
intensive neurodevelopmental therapy plus casting and a regular occupational ther-
apy program for children with cerebral palsy. Dev Med Child Neurol 1997; 39:664–
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35. Ottenbacher K, Biocca Z, DeCremer G, Gevelinger M, Jedlovec K, Johnson M.

Quantitative Analysis of the Effectiveness of Pediatric Therapy. Phys Ther 1986;
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in infants with suspected neuromotor disturbance. Neuropediatrics 1981; 12:232–
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perceptions of the effectiveness of early intervention for at-risk and handicapped
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198–202.
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12
Future Perspective on
Cerebral Palsy
Alfred L. Scherzer
Joan and Sanford I. Weill Medical College, Cornell University,
New York, New York
Charlene Butler
Health and Special Education Consultant, Seattle, Washington
Vidya Bhushan Gupta
Metropolitan Hospital Center, New York Medical College,
New York, New York
Margaret J. Barry
Department of Physical Therapy, Youngstown State University,
Youngstown, Ohio
Gay L. Girolami
Pathways Center, Glenview, Illinois
Diane Fritts Ryan and Judy M. Gardner
DuPage Easter Seals, Villa Park, Illinois

I. CONSEQUENCES OF CEREBRAL PALSY

Cerebral palsy, as a chronic condition, clearly has significant impact on the indi-
vidual, the family, and society. As we have seen, it will be a major factor in the
growth and development of the child. Psychosocial and emotional maturation
will be greatly affected (1). Schooling may present many special difficulties (2,
3). Job training and employment (4) and integration into the adult world will be
challenging (5). There will be an increased risk of injuries (6), and associated

331
332 Scherzer et al.

medical conditions (7). Life expectancy and survival will be inversely related to
the extent of functional limitations (8), especially in feeding and mobility (9).
Overall, life expectancy for the child with cerebral palsy will be reduced in com-
parison with the general population, particularly when there are significant associ-
ated medical conditions (10–12). In the age range of 15 to 19 years, for example,
developmental disabilities are the fifth leading cause of non-traumatic death, with
cerebral palsy most often cited (13).
The family is also at risk. The presence of cerebral palsy significantly af-
fects siblings (14), and the mental health of parents (15). There are also special
demands associated with providing transportation (16) and dealing with the edu-
cation and health care systems (17), which present additional burdens.
Society is greatly affected as well. In the United States, 18% of children
under 18 years of age (12.6 million) have significant chronic physical, develop-
mental, behavioral, or emotional abnormalities (18). They have 1.5 times more
physician visits, 3.5 times more hospital stays, twice the number of school days
lost, and are 2.5 times more likely to repeat a grade (19). Additional demands
for health and psychological services (20, 21), structural alterations, aids and
equipment (22), educational requirements (23), and other community resources
(24), have major financial impact. One can only speculate on the potential loss
in human contribution from individuals with cerebral palsy who are either unable
to fully participate in society, or remain idle (25).

II. THE CHALLENGE TO REDUCE CEREBRAL PALSY

Given the enormous consequences to the child, the family, and society, it be-
hooves us to look for future solutions to reduce cerebral palsy incidence, preva-
lence, and severity. Prevention would be the approach of choice. However, for
the minimum of individuals who are then ultimately involved, means must be
found to reduce both the extent and severity of involvement, and to improve
function. More efficient and effective educational, health, and community ser-
vices need to be developed. And, finally, integration into the most appropriate
and useful adult lifestyle must be achieved, with full acceptance and equal status
within the community. The new millennium offers a fresh perspective from which
to view these challenges.

A. Prevention
1. Congenital Cerebral Palsy
Efforts at prevention of congenital cerebral palsy must deal with the following
etiological factors discussed previously in Chapter 2: birth asphyxia, prematurity,
other perinatal factors, and possible prenatal factors.
Future Perspective 333

(a) Birth Asphyxia. The saga of cerebral palsy that started two centuries
ago is likely to reach its denouement in this new millennium, when advances in
molecular biology will literally take us to the root of this condition. Two centuries
ago we identified the phenomenon of cerebral palsy and its two common associa-
tions, birth asphyxia and preterm birth. It took us a century to put the horse before
the cart. Pioneering discoveries of the National Collaborative Perinatal Project
(NCPP) and later work of Nelson and colleagues established that much of the
asphyxia seen at term is secondary to an upstream event in the prenatal period,
such as maternal infection or fetal malformations (26–28). Developing epidemio-
logical studies are likely to reveal these upstream events, and there is hope that
we shall be able to develop strategies to prevent and contain them.
Rapid strides in the last decade have unfolded the cascade from the up-
stream event to its final destination. We now understand that the neuronal damage
in cerebral palsy is mediated by excitatory neurotransmitters such as glutamate,
which open the NMDA channels, allowing calcium to enter the cell to disturb
mitochondrial function (29, 30). This sets in motion a vicious cycle by further
depolarizing the cell membrane and opening more channels, resulting in immedi-
ate and programmed cell death, called apoptosis. The more glutamate receptors
an area has and the more metabolically active it is, the more vulnerable it will
be to asphyxial damage. The basal ganglia and cerebral cortex are the most vul-
nerable to asphyxia in the term infant. Efforts are now underway to detect this
cascade at an earlier point so that it can be nipped in the bud.
New developments in magnetic resonance spectroscopy, near-infrared
spectroscopy, and magnetic resonance imaging will enable us to localize and
quantify problems in cerebral metabolism following intrapartum hypoxic-
ischemic injury (31). In the future, we may be able to monitor changes in cerebral
hemodynamics during labor with near-infrared spectroscopy study, thus decreas-
ing our dependence on the much less accurate technique of fetal heart rate moni-
toring. We may be able to identify hypoxic-ischemic injury early by detecting
elevated cerebral lactate concentration. This may allow us to identify infants who
could benefit from the new cerebroprotective treatments. These neuronal rescue
therapies include drugs that inhibit release of calcium, such as calcium channel
blockers, drugs that block glutamate receptors, such as NMDA receptor antago-
nists, free radical scavengers, nitric oxide synthase inhibitors, and hypothermia
(32, 33). The role of carbon dioxide and glucose is being elucidated so that we
can manage newborns better.
While there have been many recent innovative developments in the very
early identification of hypoxemia/ischemia (34), the technology at present is ex-
tremely expensive, still highly complex, and may not be readily available. There
is a need for more clinically accessible procedures that can lead to earlier and
more widespread use and appropriate intervention.
334 Scherzer et al.

(b) Prematurity. Another revolutionary achievement of medicine has

been the survival of tiny infants, with increasing numbers now born at less than
28 weeks of gestation, often weighing 750 g or less. This has brought in its
wake a higher prevalence of disabling conditions, such as cerebral palsy. This
millennium holds the promise of saving even tinier newborns and the challenge
of saving them without disabling conditions. The preterm brain has its unique
pattern of vulnerability to injury. Whereas in the full-term infant the basal ganglia
are more prone to hypoxic-ischemic injury, the periventricular white matter bears
the brunt of insult in the preterm infant because of the vulnerability of oligoden-
drocyte precursors to free radicals and inflammatory cytokines (35). Death of
oligodentrocytes leads to failure of myelination. It is hoped that we will be able
to stop this cascade by preventing oligodendrocyte death through scavenging
free radicals, and promoting myelination and axonal growth by providing trophic
factors, such as basic fibroblast growth factor and IGF-1 (36). Understanding the
molecular basis of cell death and treatments targeted to prevent cell death may
finally lead to a decrease in the prevalence of cerebral palsy that has eluded us
so far, despite all the advances in obstetrics and neonatal care.
The preterm birth rate in the United States is increasing, and low-birth-
weight births (⬍2500 g) are at the highest level reported since 1973 (37). This
is a major factor in the U.S. ranking of 24th in infant mortality among other
developed countries (38). Multivariate causality relates to social and economic
conditions, and issues of maternal health and nutrition (39). However, many
unanswered questions remain concerning the actual mechanisms involved, and
there is need to better understand the etiology of adverse pregnancy outcomes
along the entire birth weight spectrum (40). Definitive studies are essential to
identify and deal with all possible variables, while renewed efforts are made to
clearly reduce preventable causes such as maternal use of tobacco, alcohol, and
drugs. Certainly, a future hope would be for some form of manipulation affecting
the events at the cellular level, and possibly even genetic engineering to mothers
at risk.

(c) Other Perinatal Factors. Although there is generally a well-estab-

lished routine for management of hyperbilirubinemia, possible maternal infection
with chlamydia and other pathogens must be identified and treated appropriately
(34). Another therapeutic challenge is recently identified maternal clotting disor-
ders that may lead to strokes and cerebral palsy (Leiden mutation) and disorders
related to autoimmunity and hypercoaguability (41).

(d) Prenatal Factors. Factors associated with maternal general health

and appropriate treatment of remedial conditions, such as thyroid abnormalities
and infection, must be addressed vigorously. Likewise, maternal exposure to to-
bacco, alcohol, drugs, toxins, and radiation needs to be targeted through aggres-
Future Perspective 335

sive public health education and further studies of environmental hazards should
be performed.

2. Acquired Cerebral Palsy

Preventive efforts require early identification and treatment of childhood infec-
tions and vascular abnormalities that can involve the central nervous system.
Trauma also remains a major factor, especially where childhood supervision is
limited, and is an increasing peril in areas of the world where landmines are
prevalent (42). The international community must be sensitized to the devastating
effects of residual land mines causing traumatic brain injury as well as limb
deficits where there are the least resources to provide needed care.

3. Genetic Cerebral Palsy

Special populations at risk (43, 44) must be made aware of susceptibility and
provided appropriate education and counseling. At the same time, additional stud-
ies need to continue case finding and probing definitive genetic etiology.

B. REDUCTION OF EXTENT AND SEVERITY

1. Definition of Cerebral Palsy
Several issues surround the current nosology of cerebral palsy, including lack of
a precise and universally agreed definition, difficulty of case ascertainment due
to the uncertain time of onset, and changing signs and symptoms during its early
evolution. Cerebral palsy is different from other medical conditions in that it is
defined as a disability, an abnormality of motor function. However, the degree
of motor function that qualifies as cerebral palsy is not standardized. Is clumsiness
cerebral palsy? Does abnormal tone, posture, and reflexes, in the absence of sig-
nificant functional deficit, constitute cerebral palsy?
Cerebral palsy is defined as an injury to the immature brain, but there is
no clear consensus on a time frame for delineating congenital and acquired cate-
gories. In the United States and Sweden, for example, etiology that occurs beyond
the neonatal period is considered acquired, whereas in Australia this designation
is used only with events beyond 5 years. Should postneonatal cases in which a
definite etiology is identifiable be included as congenital or acquired? Should
motor dysfunction due to identifiable chromosomal and genetic conditions be
called cerebral palsy? Perhaps a consensus may never be reached on these issues
and we may move to a noncategorical definition based entirely upon functional
limitations. This latter approach is gaining ground for programmatic and adminis-
trative reasons (45).
336 Scherzer et al.

In this volume, we have attempted to clarify the definition of cerebral palsy

as a static encephalopathy with primary motor characteristics. Moreover, it is
developmental in nature, and must be viewed in relation to changes in the growing
infant. The current classification does not sufficiently reflect the dynamic and
changing nature of the condition, especially in the young child. A more up-to-
date classification is needed to help emphasize the duality of this static condition
that has, at the same time, dynamic, changing features. Nevertheless, ‘‘cerebral
palsy’’ is not a wastebasket term to be used indiscriminately for any child with
possible delays or retardation. These concepts are essential for all health prac-
titioners to understand as a basis for appropriate referral and treatment.

2. Early Diagnostic Referral

We have seen that an orderly, systematic approach to early diagnosis can be
achieved with a high degree of specificity; that functional levels and change over
time can be predictably measured with a large variety of screening instruments.
The procedures, techniques, and many tools are therefore available now. Unfortu-
nately, the extent of very early referral continues to be limited for infants with
developmental delay (46), although well accepted for those with a clear diagnosis
(47). Renewed efforts must be made to acquaint health professionals with the
techniques and value of early diagnosis so that appropriate referral can be made
for both management and treatment, even if there are not sufficient criteria for
a specific label.

3. Management
Assistance to families with daily care and management of the infant with cerebral
palsy is a cornerstone in early intervention. This is an area with few relevant
studies and needs more data regarding parental communication, cross-cultural
variables, and specific techniques for dealing with both the child and the environ-
ment.

4. Therapy
(a) Treatment Outcomes Research. As indicated in Chapter 11, the
available levels of evidence provided by published research studies do not pres-
ently substantiate specific long-term benefits of either neurodevelopmental ther-
apy (NDT), or early intervention for any method of physical therapy for infants
who are eventually diagnosed with cerebral palsy. This does not mean that these
approaches are ineffective, nor does it mean that these studies supply negative
proof. On the contrary, the evidence tables and reviews of treatment outcomes
in Chapter 11 demonstrate that for all three interventions reviewed there is a
paucity of adequate studies from which we may learn about the efficacy of inter-
Future Perspective 337

ventions. This is in fact true for all interventions in cerebral palsy—and, indeed,
for almost all interventions in health care because it is in an interim period. Health
care is in the process of leaving behind a paradigm that is exclusively based on
the compelling logic of current understanding about the mechanism of action of
interventions in human biology. It is entering a paradigm that requires empirical
evidence in addition to this compelling logic of biology and theory. Health care
is just beginning to build this empirical base.
The AACPDM methodology for systematic reviews is already pointing out
gaps in research that need to be filled by future research, particularly the lack of
any data outside the dimension of impairment. There is an immediate need for
research protocols to include multiple measures across dimensions of dis-
ablement. Also, the internal validity of the majority of current studies is wanting.
Thus, there is an urgent need for more studies, especially those that produce
stronger levels of evidence.
Conducting definitive research studies in cerebral palsy is more difficult
than in other areas of health care, but these problems will be overcome as the
requirement for empirical evidence grows. One of the thorny issues is how to
conduct treatment evaluation in chronic, sometimes severe, and often complex
disabilities present from early childhood. Group research that has a long tradition
in medicine is not well suited to the study of such disabilities. There are, how-
ever, other approaches that do lend themselves to treatment evaluation in low-
incidence, highly heterogeneous populations, notably, single subject research (or
within subjects methods).
The group and single subjects approaches are differentiated by the type of
variation each method measures. Group research is limited to a measure of the
variation of results at a group level. Single subject research measures the variation
of results for an individual. But when multiple individuals are studied, single
subject research can also measure the consistency of variation for the group and
produce a group result.
Single subject research offers an alternative to group research and is the
method of choice in two situations. One of these situations is the study of inter-
ventions in populations so heterogeneous in nature that any summative statements
of groups as a whole might be terribly misleading. Another situation is the study
of low-density populations in which it is not feasible to muster even the small-
est of group sizes that would be acceptable for a reasonable group study. Both
of these situations exist in the study of interventions for individuals with cerebral
palsy.
In treatment evaluation, single subject strategies can prove to be as power-
ful and persuasive as group strategies. While most of the same factors can threaten
the credibility of findings from a group or single subject study, the group methods
usually seek to control for those threats by distributing potentially confounding
factors evenly among the various groups. The uneven (albeit unknown and unin-
338 Scherzer et al.

tentional) distribution of these factors in one group provides one of the most
common threats to validity (called biased subject selection) in group studies.
Single subject methods obviate this particular threat to internal validity because,
with no groups, there is no potential for unknown bias in one of the groups. In
addition, single subject methods allow for the direct observation and analysis of
other threats. Thus, single subject methods can produce strong credibility (inter-
nal validity) that the observed changes can be attributed to the intervention, or
conversely, that the intervention was not efficacious (not able to bring about the
desired result).
In single subject methods, the same person is exposed to both the treatment
and the control condition(s), thus acting as his or her own control. Attributing
the measured difference to the intervention depends on comparing stability of
outcomes measured repeatedly during each condition, and on shifts in the ob-
tained differences being consistently coincident with the shifts between the treat-
ment and control conditions.
Most researchers in developmental disabilities are currently unfamiliar with
single subjects methods. As they begin to appreciate and embrace this research
methodology along with group methodology, however, there will be increased
opportunity to produce definitive research.
(b) Evolving Therapy Approaches. Therapeutic theory, methods, and
clinical application will naturally continue to evolve as therapists look for models
that more closely mirror the CNS acquisition of motor control. The dynamic
systems approach, which emphasizes environmental interaction for function, has
become prominent in recent years. Rather than being a new and separate therapy
modality, it strongly supports a trend of all therapy interventions to become more
successful at achieving and maintaining function. It may also become an impor-
tant factor in how all therapy procedures evolve. Further research and appropriate
evidence-based studies will be needed to substantiate its relevance and effective-
ness.
In whatever direction research may guide the therapy process in the future,
it is clear that there will always be a need for sound clinical judgment in selecting
treatment alternatives. Moreover, therapy should not be considered a way of life
in itself, but a means to help improve function and, thereby, quality of life. Inter-
ventions must fit into a family’s daily routine, not consume them. And the word
‘‘compliance’’ should be taken out of our vocabulary. There should be no adverse
judgments about a family’s acceptance or rejection of our recommendations.

5. Other Treatment Modalities

Botulinum A toxin, intrathecal baclofen, and selective dorsal rhizotomy have all
gained widespread acceptance in recent years, each with strong adherents and
varied approaches to clinical use. Unfortunately, there are very few conclusive
Future Perspective 339

data about any of these treatments that support their effects on individual func-
tional change or long-term benefit. Moreover, there is no uniformity or standard-
ization of protocols in using these modalities either individually or in combina-
tion. Appropriate studies are urgently needed to enable a more rational approach
to these current practices, and to achieve professionally agreed-upon standards
of uniform criteria and clinical application.
It should also be noted that new treatment modalities have come into clini-
cal practice in the past largely through trial and error, or as an extension from
other established uses. The new theoretical insights of the central nervous system
at the molecular level now offer possibilities for planned prospective studies in
the future that are unparalleled. These should include such approaches as genetic
engineering, changes in neurotransmitters, and alteration of brain tissue, among
others.

6. Technology
Cerebral palsy is more appropriately regarded as a developmental disorder than
a musculoskeletal condition. For some years, there has been a growing recogni-
tion in child development fields that physical and psychological development are
interrelated and that early experiences influence all subsequent behavior. When
development along any line (motor, cognitive, social, emotional) is restricted,
delayed, or distorted, the other lines of development are adversely affected as
well. Motor skills that develop rapidly during the first 3 years of life are the
primary vehicle for learning and socialization. They foster a sense of competence
and independence. Through their motor interactions, infants and toddlers learn
about things and people in their world, and also discover they can cause things
to happen. They become active initiators and participants rather than passive
recipients of experience.
Infants and toddlers with cerebral palsy often lack the necessary movements
for locomotion, manipulation, and speech that make it possible for them to engage
and act on their environment. Thus, learning opportunities are hindered. Equally
important, their inability to influence the environment, that is, to affect or alter
it through their own actions, leads to a condition of learned helplessness in which
children give up trying to control their own world (48). Repeated failure in explor-
ing and mastering situations leads to a self-perception of incompetence and a
passive resignation that extinguishes further attempts (49). A sense of help-
lessness (or a sense of incompetence) is well established by four years of age
(50, 51).
With the assistance of technology, even very young children with cerebral
palsy can experience more success in directly controlling their environment,
thereby reducing or avoiding secondary social-emotional and intellectual disabili-
ties (52). Increasingly, opportunities for using technology have become available
340 Scherzer et al.

to the birth to 3 population. Computer applications, powered mobility, augmenta-

tive communication devices, environmental control systems, and battery-powered
toys have been successfully demonstrated in research settings. Infants as young
as 3 months have interacted with computers, 18-month-old children have driven
powered mobility devices skillfully and safely, and 2-year old children have
talked via speech synthesizers. For severely involved children, use of these as-
sistive technologies depends on first learning to use switches and/or scanning
techniques on which they may always have to rely for control of all their mobility,
communication, independent learning, and environmental interaction. Children
who are competent users of these technologies by the time they enter school
have a greater potential for achieving success in mainstream education, and for
participating in other normal social roles in their families and communities.
Assistive technologies in the use of adaptive, supportive, and mobility
equipment will be greatly enhanced in the future as the demand for appropriate
hardware and software for this young population grows. Families will increas-
ingly understand that use of these technologies will not demotivate youngsters
to strive to walk, talk, and manipulate things with their hands, but instead offer
a means by which motor disabilities can be by-passed. Appropriate timing for
their use is not after children have failed to achieve normal movement through
extensive casting, bracing, surgery, and therapy, but when a particular motor skill
or activity appears in normal development. If, for example, there is no efficient
ambulation shortly after the age of one year, a developmental approach to man-
agement would substitute as an alternative means of mobility using assistive tech-
nology. The aim would be to promote overall development rather than merely
improve the musculoskeletal disorder, although the latter cannot be ignored.
Planned, total integration in the anticipation of and use of all assistive devices
for a given child requires priority consideration, and must be built into the overall
intervention program as it develops (53, 54).

7. Effective Use of Services

Community health, education, and social services for the child with cerebral
palsy vary widely in accessibility and ease of use. On the one hand, many simi-
lar treatment facilities may exist in a given area, creating confusion about what
would be most appropriate. On the other hand, the lack of facilities in some
localities requires extensive travel to obtain services. Moreover, often both prac-
titioners and parents are not knowledgeable about available resources, and it is
not unusual for families to be endlessly confused about where to obtain help.
Health facilities, schools, and social agencies need to provide information to
professionals about available services in a more centralized way, which must
then be communicated more effectively to families. And, in turn, education of
parents must focus on providing a clear understanding of how to become better
Future Perspective 341

involved in the health, education, and social systems with which they will have
to deal.
Habilitation of the very young child implies the use of a wide variety of
services over a long period of time. Costs of health care, transportation, and the
financial implications of lost work time to utilize services are all important factors
that bear on family interaction and ultimate benefit to the child. The burden of
organizing and paying for needed services can be staggering for families, espe-
cially those at the low end of the economic scale. The current managed care health
system in the United States is not designed to deal effectively and efficiently with
the need for coordinated, multispecialty care required by the infant with cerebral
palsy. Dealing with this system has added to the demands placed upon the fami-
lies of children who increasingly benefit from the new technological advances
that enable very early diagnosis and referral. This paradoxical situation requires
strong advocacy as legislation and administrative changes continue to be made
in the evolving health care system.

8. Integration into the Community

Ultimate success of the early diagnosis and treatment process will depend on
how well the child with cerebral palsy can be integrated into the adult community.
There are many existing gaps and inconsistencies in education and training that
need to be addressed, and a much more organized transition process to adulthood
must become an integral part of the education process. A goal of full and equal
employment remains more a hope than an achievement, while societal acceptance
with total participation is a dream that will continue to require continuous and
vigorous efforts at attitude change. A new millennium could provide the impetus
to jump-start efforts to achieve these goals, providing we are motivated to make
them a high priority.

III. CEREBRAL PALSY IN THE DEVELOPING WORLD

The United States and the western industrial nations have had the resources and
technological capability to develop what is considered to be the ‘‘standard’’ of
treatment in this field. This is the case even though we continue to lack adequate
scientific validity of our own methods, as we have seen. At any rate, we have
until recently applied our procedures as best we can, primarily within our own
societies and cultures.
We can now begin to see some extension in the application of our technol-
ogy beyond our own borders, for a new revolutionary component is upon us. In
spite of ever-present infectious diseases and malnutrition, increasing numbers of
children are now surviving with greater frequency. According to United Nations
342 Scherzer et al.

estimates (55), and international surveys (56), some two thirds of the world’s
500 million handicapped children live in Third World nations.
A number of official agencies such as UNICEF, WHO, individual govern-
ments, and nongovernmental organizations are now actively involved in working
with these areas on the problems of children with handicaps. Confusion, overlap-
ping, and duplication of efforts continue to be a mark in some of these activities,
largely due to the numbers of agencies and programs involved, as well as prob-
lems in communication and information exchange between them.
More important, the direct application of our purely Western technology
and methods is obviously impractical economically, and clearly inappropriate
culturally. Both WHO and UNICEF recognized the need to overcome these obsta-
cles several years ago and helped initiate the Community-Based Rehabilitation
(CBR) movement (57). In a large number of Third World countries, projects
begun at the grass roots level in the 1980s (often initiated locally) have continued
to flourish (58). Technical personnel train local individuals in rudimentary early
identification of handicaps, simple methods of treatment, and use of local materi-
als for needed equipment (59–61). This type of activity will surely be in greater
demand as we can anticipate increasing survival of children with handicaps in
these areas and little likelihood of improved resources in the foreseeable future.
Of major concern is the continued presence of land mines. The resultant
brain and limb trauma to untold numbers of children is a major factor in the
incidence of acquired cerebral palsy. Although some additional rehabilitation ser-
vices are being made available, the demands are staggering, while resources and
even recognition of the problem remain less than acceptable (62).
Therefore, the time has come for us to increasingly use our expertise to
assist in this effort. We need to have a firmer grasp on the relevance of our own
therapy and treatment methods through the kinds of studies we have previously
indicated. We must then have the skill and wisdom to adapt them to cultures
elsewhere, such as the Third World, where there is need for a simple, economi-
cally feasible, and practical approach (63). Any system of therapy and treatment
that evolves will have little relevance unless it takes into account the social and
cultural context of a disability rather than simply the diagnosis alone. An opportu-
nity and an obligation is now before us to bring this kind of world perspective
into our treatment efforts.

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Index

Abnormal infant neurologic develop- American Academy for Cerebral Palsy

ment, 51–52 and Developmental Medicine:
consequences of, 96–101 classification of levels of evidence,
discordant neurologic maturation, 275–277
96 treatment outcomes framework, 272–
motor patterns of behavior and dep- 273
rivation, 99–100 Apgar score, and prediction of develop-
oral development deficits, 100– mental abnormality, 32, 52–53
101 Appraisal of treatment outcomes litera-
sensory deficit and function, 98– ture, problems in, 271–272
99 Assessment and treatment planning,
specific motor abnormality; case study, 229–266
posture and movement, assessment, 229–238
100 assessment work sheet, 232
tone abnormality, 96–97 written assessment, 232–234
developmental milestones, 52 charting progress, 259
general movements, 51 initial treatment plan, 238–259
motor abnormality, 52 treatment planning worksheet, 251,
prediction of, 52–55 254
tone, 52 treatment strategies, 254, 259
American Academy for Cerebral Assessment models of disability:
Palsy: National Center for Medical Rehabilita-
becomes AACPDM, 12 tion Research, 130, 142, 271, 273
establishment, 10 World Health Organization ICIDH-2,
founders, 10 130, 142, 271, 273

347
348 Index

Assessment of discipline specific perfor- [Cerebral palsy]

mance areas, 161–168 classification:
analysis of, 178–181 approaches, 13–16
occupational therapy, 166–171 distribution, 13
activities of daily living (ADL), history, 14–16
171 motor types, 13
hand function, 169–171 severity, 13–14
play, 171 congenital:
reach and upper extremity support, differential diagnosis, 79–81
166, 169 etiology, 8, 28–37
physical therapy, 161–166 prevention, 332–335
activities of daily living (ADL), consequences of, 331–332
166 current trends, 20
equipment, 166 definition, 12–13
gait, 165–166 history, 12
gross motor functions, 161–165 and reduction of extent and sever-
speech therapy, 171–178 ity, 335–336
communication function, 178 in the developing world, 341–342
oral motor/feeding, 172 and Easter Seal Society, 9
phonatory function, 172, 177 epidemiology, 38–42
respiratory control, 172 prevalence, 38–39
Ayres’ sensory integration, 268 secular trends, 39
and the very low birth weight in-
Bobaths, and neurodevelopmental treat- fant, 39–40
ment, 122, 123, 268 etiology, 27–38
Botulinum A toxin: birth asphyxia, 30
as neurolytic blocking agent in treat- hyperbilirubinemia, 34
ing spasticity, 108–109 infection, 35, 334
and treatment outcomes research, perinatal factors, 35–37
338 preconceptional factors, 37
prematurity, 27–37, 334
Carlson Earl (AACP founder), 10 theories of Freud and Little, 8
Cerebral palsy: genetic:
acquired: differential diagnosis, 81
and differential diagnosis, 81 etiology, 37
etiology, 37–38, 335, 342 prevention, 335
historical link to infection, 9 history, 1–12
associated abnormalities, 16–17, 41, in ancient Egypt, 1
42 in Elizabethan times, 1–2
behavior problems, 42 modern era, 9–12
consequences, 331–332 nineteenth century, 2–9
epilepsy, 41 pre–World War II, 9
mental retardation, 41 prevention, 332–335
sensory impairments, 41–42 acquired, 335
challenge to focus on the infant, 20 congenital, 332–335
challenge to reduce, 332–341 genetic, 335
Index 349

[Cerebral palsy] [Developmental approach to diagnosis]

reduction of extent and severity, developmental neurological examina-
335–341 tion, 63–73
early diagnostic referral, 336 cerebellar function, 68
effective use of services, 340 cranial nerves, 67
integration into the community, general observation, 63
341 motor signs, 70–71
management, 336 neurologic soft signs, 71–73
and need for revised definition of patterns of motor behavior, 64–
cerebral palsy, 335–336 67
other treatment modalities, 338– quality of general movements,
339 63
technology, 339–340 sensation, 67
therapy, 336–338 tone, 63
severity, 13–14 developmental physical examination,
and Gross Motor Function Classifi- 61–63
cation System, 14 abdomen, 62
and static encephalopathy, 17–18 back, 63
through the life span, 18–20 eyes, 62
adolescence, 19 genitalia, 63
adult, 19 head and neck, 62
birth to three years, 18 developmental screening, 53–55
pre-school, 18 physiologic screening, 52–53
school age, 19 screening instruments, 54–55
senior adult, 19–20 Developmental evaluation, perspective
Colby, Jennie, and early physical ther- on, 84
apy 9, 122 Developmental milestones:
Crothers, Bronson: abnormal, 52
AACP founder, 10 and differential diagnosis, 77–
and interdisciplinary treatment of cere- 83
bral palsy, 9, 122 normal, 50, 59–60
Differential diagnosis considerations,
Deaver, George: 78–84
AACP founder, 10 myopathies, 84
and history of therapy, 122 neuropathies, 83–84
Developing a plan for treatment and progressive CNS disease, 83–84
evaluation, 112–113 static encephalopathy, developmental
Developmental approach to diagnosis, evaluation profiles, 78–83
55–76 Disability terminology:
developmental history, 56–61 disability/participation limitations,
chief complaint, 56 144
developmental milestones, 59–60 functional/activity limitations, 144
family and genetic history, 56 impairments, 142
other developmental features, 60 pathophysiology, 142
past medical history, 61 societal limitations/contextual factors,
review of systems, 61 144–145
350 Index

Disablement models, 130–131 Gastrostomy feeding:

National Center for Medical Rehabili- explained, 289–290
tation Research, 130, 142, 271, review of effects, 288–299
273 analyzing the evidence, 295–298
World Health Organization ICIDH-2, discussion, 298–299
130, 142, 271, 273 evidence tables, 291–295
body level, 130 review of studies, 290–291
environmental level, 131 search results, 290
person level, 130 Gathering information for the inter-
social level, 131 disciplinary assessment, 145–
Documentation, 214–221 147
daily documentation, 217–218 assessment data, 145–147
initial treatment plan, 214–215, background data, 145
217 General movements:
progress notes, 218–219, 221 abnormal, 51
Doman and Delacato, 124, 268 and attention deficit disorder, 82–83
Dynamic systems: and cerebral palsy, 77, 79
approach to development, 50, 51 definitely abnormal, 51, 77, 79
theory, 132, 268 and mental retardation, 82
mildly abnormal, 51, 82–83
Early intervention: and pervasive developmental disor-
defined, 314–315 der, 82
review of the effects, 314–327 Gowers, and Little’s theory of cerebral
analyzing the evidence, 325– palsy, 5
326 Gross Motor Function Classification Sys-
discussion, 326–327 tem, 14
evidence tables, 319–321, 325
review of studies, 317–319 Infant developmental evaluation profile,
search results, 316–317 78–83
and timing, 315–316 attention deficit disorder, 82–83
Evaluation model, 141–145 cerebral palsy:
Evidence based health care, 270 acquired, 81
congenital, 79, 81
Fay, Temple: genetic, 81
AACP founder, 10 mental retardation, 81–82
and patterning, 124 pervasive developmental disorder,
Feeding problems, consequences, 288– 82
289 Intrathecal baclofen:
Formulating the diagnosis, 76–78 inconclusive data of effectiveness,
cerebral palsy, 77 338
developmental delay, 76–77 as spasticity treatment, 109
Freud, Sigmund:
and cerebral palsy classification, Laboratory evaluation, scope of:
14 and EEG, 75
and cerebral palsy definition, 12 genetics workup, 75
and cerebral palsy etiology, 5, 8 initial screening tests, 75
Index 351

Little, John: Patterns of motor behavior (infant re-

and etiology of cerebral palsy, 8 flexes):
personal history, 3–5 abnormal, 52
study of infant developmental deficits, 4 assessment, 64–67
Little’s disease, 5 and differential diagnosis, 81–83
and infant reflexes, 50
Management and treatment consider- normal, 50, 52
ations, 101–112 and Prechtl’s concept of central pat-
management assistance, 102–103 tern generators, 50
daily care, 102–103 Perlstein, Meyer:
handling, 102 AACP founder, 10
positioning, 102 cerebral palsy classification, 15
Motor development and control theo- cerebral palsy etiology, 28
ries, 131–133 Phelps, Winthrop:
dynamic systems, 50–51, 104, 32– AACP founder, 10
133, 268, 338 cerebral palsy classification, 14–15
hierarchical/maturational, 50, 131– community rehabilitation, 9
132, 268 and history of therapy in the United
States, 122
Neurodevelopmental therapy: Physiologic screening, 52–53
defined, 299–300 biochemical, 52–53
history, 268 Apgar score, 52–53
review of the effects, 299–314 blood acidemia and base deficits, 53
analyzing the evidence tables, urine products, 53
310–313 neuroimaging, 53
discussion, 313–314 prenatal, 53
evidence tables, 303–310
review of studies, 300–303 Reassessment process, 221–225
search results, 300 Reflexes, infant (see also Patterns of mo-
Normal neurological maturation, 49–51 tor behavior):
abnormal, 52
Overview of the systems to assess, 147–161 assessment, 64–67
cardiopulmonary, 157–158 and differential diagnosis, 81–83
endurance, 158 normal, 50, 52
physiological control, 157–158 and Prechtl’s concept of central pat-
gastrointestinal, 158, 159 tern generators, 50
musculoskeletal, 154–156 Research:
neuromuscular, 156–157 appraisal of the treatment outcomes
postural control and balance, 159–161 literature, problems in, 271–272
regulatory, 149–150 conceptual framework for reviewing
sensory processing, 150–154 treatment outcomes, 272
auditory, 151 evidence:
proprioceptive, 151 availability, 273–275
tactile/somatosensory, 150–151 creditability, 275
vestibular, 151 evidenced-based health care move-
visual, 151 ment, 270
352 Index

[Research] Selective dorsal rhizotomy:

scientific validation, absence of, 268– need for additional studies, 338
269 treatment of spasticity, 109
and treatments evolution, 267–268 Service delivery models, 210–212
treatment outcomes research, increas- consultative, 211
ing interest, 269–270 direct therapy, 211
types, definitions of, 277–282 group, 211–212
ABA design, 280 Social and mental health services,
all or none case series, 277 110
anecdotes, 281 Static encephalopathy and cerebral
case control study, 279 palsy, 17–18
case reports, 281 Stoffel, neurectomy treatment, 9
case series without control group, Stromeyer, George, influence on John
280–281 Little, 3
cohort study with concurrent con-
trol group, 278 Therapy:
cohort study with historical control adjuncts, 212–214
group, 280 assistive technology and equip-
common sense or first principles, ment, 213
281–282 splinting and orthotics, 213–
n-of-1 randomized controlled trials, 214
277–278 history in the United States, 122
non-randomized controlled trials, Colby, 122
278 Crothers, 122
outcomes research analytical sur- Deaver, 122
vey, 278 Phelps, 122
randomized controlled trials, Tone:
277 abnormal, 50
theory based on physiology, and developmental neurological exam-
bench, or animal research, ination, 63–64
281 and differential diagnosis, 79–83
Reviewing treatment outcomes, con- distinction between extremities and
ceptual framework for, 272– trunk, 63
273 Treatment:
Reviews of interventions, method of controversial/alternative, 111–112
conducting, 286–288 diet therapy, 111
analysis of evidence, 287–288 hyperbaric oxygen, 111
caution about drawing conclusions, hypnosis, 111
288 megavitamins, 111
literature search, 286 neuromuscular stimulation, 111
organization of summary and evi- optometric exercises, 111
dence tables, 286–287 patterning, 111
subjects, 286 vestibular stimulation, 111
Rood: evolution, 267–268
method of treatment, 124 interventions, 122–130
and treatment evolution, 268 assistive technology, 129–130
Index 353

[Treatment] Treatment planning, 191–199

[interventions] filling in the treatment planning work-
Bobaths, 122–123 sheet, 192–196
conductive education, 128– assess outcomes of treatment ses-
129 sion and strategy, 195–196
electrical stimulation, 126– identify and prioritize treatment
127 strategies, 195
medical team approach, 133 list and prioritize system impair-
patterning, 124 ments, 195
Rood, 124–125 selecting an identified goal, 192
sensory integration therapy, guidelines for, 196–199
125 initial, 238–250
strengthening, 125–126 worksheet, 251, 259
stretching, 127–128 Treatment services, family consider-
Vojta, 123 ations, 209–210
Treatment options: Treatment strategies, developing effec-
adaptive equipment, 105 tive, 199–203
behavior modification, 110 general considerations, 199
early intervention programs, 104–105 infant considerations, 202
orthopedic care and management, therapist considerations, 202–203
106–107
orthotics, 105 Vojta:
inhibitive casting, 106 evolution of treatment, 268
mobility aids, 106 treatment intervention, 123
therapy methods, overview, 104
treatment of associated conditions, Writing the functional goal, 190–191
109–110 Writing the multidisciplinary assess-
treatment of spasticity, 107–109 ment, 185–190
intrathecal baclofen, 109 assessment data, 186–187
neurolytic blocks, 108 background data, 186
oral medication, 107–108 data analysis, 188
selective dorsal rhizotomy, 109 functional goals, 189–190
Treatment outcomes research, increasing recommendations, 188
interest in, 269–270 summary, 188
About the Editor

ALFRED L. SCHERZER is Clinical Professor Emeritus of Pediatrics at Cornell

University—Joan and Sanford I. Weill Medical College, New York, N.Y., and
Clinical Professor of Preventative Medicine, State University of New York at
Stony Brook. He is Director of the Child Habilitation Center and is also in Private
Consultation Practice specializing in Developmental Pediatrics. The author or
coauthor of over 70 publications, he is an Emeritus Fellow of the American Acad-
emy of Pediatrics and a past president of the American Academy for Cerebral
Palsy and Developmental Medicine, among numerous other professional affilia-
tions. Professor Scherzer received his medical degree from Columbia University
and also holds degrees in public health, sociology, and education.

355