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Office Management of the

Young Child with Cerebral Palsy


l
and Difficulty in Growing n
Candace F. Zickler, MSN, RN, CPNP, and Nancy N. Dodge, MD
All infants and young children need adequate caloric intake for optimal growth and
development.
This is true for children with cerebral palsy, who are at increased risk for
nutritional
problems. When appropriate
weight gain is difficult to attain, professionals
must carefully evaluate the childs diet, feeding skills, and neurodevelopmental
function;
assess parenting behaviors; and look for complications
of the childs cerebral palsy that
could further impede intake and retention of calories. A number of therapeutic
recommendations
can be given to families to improve potential weight gain. The
opportunity
to influence the overall growth of young children with cerebral palsy begins
when early and timely interventions
are provided to the family. I PEDIATR HEALTH CARE.
(1994).

8, 111-120.

he term cerebralpalsy describes a nonprogressive posture and movement disorder caused by brain injury
(Healy & Smith, 1988). The brain injury can occur
before, during, or after birth and usually is manifested
by muscle tone abnormalities in the first 2 years of life.
The degree of abnormal motor fimction ranges from
mild to severe and can involve one or all parts of the
body. Depending on the areas of the brain that are
injured, young children with cerebral palsy are at significant risk for feeding problems. Feeding problems
may sometimes precipitate the diagnosis of cerebral
palsy. Once a feeding disorder is recognized in an infant
with cerebral palsy, the problem tends to persist for a
long time.
The process of eating, even for a newborn, necessitates that the oral motor structures and the neurologic
control that orchestrates safe ingestion of liquids and
solids are intact and functioning. In the healthy term
infant, the separate actions of sucking, swallowing, and
breathing occur in a predictable sequence under med-

Candace F. Zickler, MSN, RN, CPNP, is a pediatric nurse practitioner


for
Developmental
Pediatrics at the James Whitcomb
Riley Hospital for Children
in Indianapolis,
Indiana.
Nancy N. Dodge, MD, is Medical Director of the Cerebral Palsy Program and
a Clinical Associate Professor of Pediatrics at the Indiana University School of
Medicine, James Whitcomb
Riley Hospital for Children in Indianapolis,
Indiana.
Reprint requests:
James Whitcomb
IN 46202-5200.

Candace F. Zickler, Developmental


Pediatrics Suite #1601,
Riley Hospital for Children, 702 Barnhill Dr., Indianapolis,

Copyright 0 1994 by the National


& Practitioners.
0891-5245/94/$3.00

JOURNAL

+ 0

Association

of Pediatric

25/l/48618

OF PEDIATRIC

HEALTH

CARE

Nurse Associates

ullary control (Stevenson & Allaire, 1991). In some


babies with cerebral palsy the acts of sucking, swallowing, and breathing are confused, and primitive suckling
patterns are retained (Harris, 1986). The infant with
cerebral palsy may experience an oral tactile hypersensitivity that results in choking, gagging, and extensor
thrusting of the tongue when fed in conventional styles
(Peterson & Frank, 1987). The infants inability to effectively nurse or suck the bottle may further give rise
to parent-child interaction problems (Humphry, 1991).
Nutritional and oromotor rehabilitation should begin
as soon as a problem is recognized, because good nutritional status helps infants reach their fLll potential.
n

OFFICE ASSESSMENT

Young infants come to the office for a variety of reasons,


that is, routine health examinations, immunizations, sick
child visits. A standardized routine of measuring weight,
length, and head circumference and then plotting the
numbers on the National Center for Health Statistics
(NCHS) graph enables the nurse to visually assessthe
pattern of growth. Although some healthy infants may
be small (5th percentile or below) or abnormally large
(95th percentile) or cross percentiles on a growth chart,
this is not the norm and should be thoroughly investigated (Pinyerd, 1992). When young children with
neuromotor abnormalities who have poor weight gain,
decreasing velocity of weight gain, and suboptimal intake are seen in the office, there should be concern for
this infant. In young children with motor impairments,
the most frequent factors contributing to poor growth
are insufficient caloric intake, associated medical problems, parent-infant interaction problems, or a combi-

111

lournal

112

Zickler

8; Dodge

nation of these (Fee, Charney, & Robertson, 1988;


Gardner & Hagedorn, 1991). Early identification of
infants at risk and timely interventions are important
because physical growth and cognitive development
change rapidly during the first 2 to 3 years of life (Frank,
Silva, & Needlman, 1993).
81 INSUFFICIENT CALORIC INTAKE

Infants with cerebral palsy may eat or drink inefficiently.


Lengthy feeding times make attainment of adequate volumes difficult. There is seldom time for the child to rest
between meals, and parents or caretakers time for feeding may be limited by other responsibilities (Healy &
Smith, 1988). Some children with cerebral palsy have
difficulty swallowing thin fluids; others may not be able
to swallow thickened, textured foods. Caretakers may
also limit food selections in an attempt to treat chronic
constipation, or they may think that dairy products
cause increased congestion and gagging.

nfants and children who are not gaining


weight should be evaluated during the office
visit.

Infants and children who are not gaming weight


should be evaluated during the office visit. The parent
should demonstrate how the feeding is conducted. Observations of verbal and nonverbal cues that the parent
gives to the infant should be noted. The infants response to the cuddling, nurturing, and feeding should
also be noted. At times, after an observation of the
parents techniques, the nurse can hold the baby and
experience, first hand, what the parent is experiencing.
ASSOCIATED MEDICAL PROBLEMS

Gastroesophageal reflux (GER) is caused by the lower


esophageal sphincters inability to prevent retrograde
passage of stomach contents into the esophagus (Allen,
1989). This results in chronic irritation of the esophageal mucosa, dyspepsia, and the potential for aspiration
of gastric contents. R&x in infants with cerebral palsy
may persist or worsen with time.
Constipation, which is common among children
with cerebral palsy, is due to the inability of the child
to take in sufficient quantities of fluid and fiber, a decreased awareness of the need to defecate, irregular toileting habits, fear of pain and discomfort when defecating, or a neurologic dysmotility. Untreated constipation may result in abdominal discomfort, poor
appetite, emesis, and urinary obstruction/retention
(Crump, 1987; Fee et al., 1988).
Pain associated with food refusal may be due to dental factors such as poor oral hygiene, pyorrhea of the

of Pediatric Health Care


Volume 8, Number 3

gums, or gingival hyperplasia. In some children inadequate swallowing and drooling tend to make feeding
experiences for both the child and the caretaker unpleasant (Limbrock, Hoyer, & Scheying, 1990). Orthopedic concerns such as muscle spasms and dislocated
hips result in pain that also negatively impacts on the
feeding experience (Lee & Lyne, 1990). Unless the pain
and discomfort are treated, the oral intake may be dramatically diminished.
The young child with cerebral palsy may have highenergy expenditures due to athetoid movements or
increased tone (spasticity). Children with spasticity are
often unable to manipulate the food/fluid bolus to the
back of their mouth and choke when it reaches the
esophagus. The exaggerated jaw and tongue movements
result in uncoordinated
suck-swallow-breath cycles.
Rhythmic tongue protrusions and the constant wormlike writhing movements seen in athetosis tend to increase drooling and inhibit effective swallowing.
Children who chronically aspirate experience recurrent lung infections, which puts them at increased risk
for weight loss. This is especially true when the cerebral
palsy involves the entire body (quadriplegia). With each
infection the childs intake of necessary nutrients is decreased, at the precise time when necessary nutritional
stores are being utilized (Frank & Zeisel, 1988).
Drvaric, Roberts, Burke, King, and Falterman (1987)
noted that children with quadriplegia and abnormal
weight-for-height before surgery were at greater risk for
surgical complications, such as poor wound healing,
wound infections, and aspiration.
PARENT-INFANT

INTERACTION

PROBLEMS

Feeding is a major part of the care for the newborn and


young child, and appropriate weight gain is viewed as
a marker of success (Humphry, 1991). Parenting behaviors are learned as the babies behavioral cues are
interpreted. The exaggerated/excessive movements of
the young child with a movement disorder may frighten
the parent. Infants with cerebral palsy may require more
time to initiate and complete the feedings, and this additional time may arouse frustration with the parenting
role. Dysfunctional parent-infant interactions may manifest themselves in suboptimal mealtimes (Singer,
1990).
Behavioral food refusal is not uncommon in children
with cerebral palsy. In a healthy infant, food is regularly
and consistently paired with pleasurable experiences.
The child with cerebral palsy may associate feedings
with painful oral intrusions (tube feedings), gagging,
abdominal cramping, bad-tasting medicines, unmanageable textures, or fear of choking. As children react
to the feeding experience, the expected cues for hunger
and satiety may be different than what is anticipated by
the parent. Children may turn their head away, spit food

journal of Pediatric
May-June 1994

Health

Care

Zickler

Section

I - Physical

Name

Patient

Number

Todays

&eWeight

113

Data
Birthdate

Patient

& Dodge

---

Date

I
I-

Percentile
Percentile

Length
Head

Percentile

Circ.
Section

Number

II - Eating

Length

Consistency

of Time/Meal

Number

History

Snacks/Day

of Meals/Day

of Food

of TBSPlOuncesKtay
GrainsHigh

Fruits-

MeatsMilk -

Other-

Additives/per
Section

meal
III - Feeding

FormulaCalorie

Chewina

Choking-

Drooling-

Tongue

Constipation-

Gross

Concerns

Thrust-

IV - Current

Medications/Treatments

V - Adaptive

Section

VI - Developmental
Fine

Gulping

ApneaFood Refusal-

Section

Motor

Vomiting

Gag&a--

DiarrheaSection

Juices -

VBggies-

Equipment

Level

Motor

P/S

Language
Section

Worksheet

8 FIGURE 1 Nutritional

for evaluating

gowth

VII - Medical

and development

assessment.

out, and choke or gag if food is offered in a manner


other than how the child is able to manage it (Carruth,
Skinner, & Nevling, 1993).
ASSESSMENT OF
FEEDING/NUTRITIONAL

Diagnosis

chosocial issues (Brizee, Sophos, & McLaughlin, 1990;


Pinyerd, 1992). Concurrent assessment of organic and
nonorganic risk factors for failure to thrive are frequently necessary (Dietz & Bandini, 1989).

DISTURBANCES

Nutritional screening should be conducted on all ch&


dren by a procedure that is complete enough to provide
su&ient data (Figure 1). If the anthropometric data
(weight, length, and head circumference), the history,
or the physical examination identifies any at-risk factors
that are indicative of alterations in growth, the child
should receive a more comprehensive nutritional evaluation by a dietitian. The nurse practitioner should identify young children who are failing to grow and seek
out the origin of the problem. The cause of the nutritional deviation is not always simple and often involves
dietary, medical, developmental, behavioral, and psy-

ANTHROPOMETRIC

DATA

The anthropometric measurements of height/length,


weight, and head circumferences should be obtained on
a regular basis and plotted with standardized growth
charts (Pinyerd, 1992). Accurate (check the positioning
and remeasure each child at least three times) measurements that are recorded on the NCHS age-appropriate
chart enable the nurse to track growth (Henry, 1992;
Pinyerd, 1992). Weights should be obtained on a reliable scale, using the same scale for each visit. Infants
and children should be naked, and older children (over
2 years of age) should be weighed with only underwear
or perhaps a cover gown. The areas between the per-

lournal

centiles on the NCHS graphs are called growth channels, and crossing from one growth channel to another
is a marker for concern (Henry, 1992). Infants born
prematurely should have their growth parameters corrected before the numbers are plotted on the NCHS
growth chart. By subtracting the number of weeks of
prematurity from the infants chronologic age, the corrected age is obtained. Age correction is performed
until the infant is 2 vears of chronologic age. (Kelsey,
1993).
The childs length is measured in the recumbent position on children under the age of 3 years or when a
standing measurement is impossible because of the degree of motor handicap. Segmental measurements are
obtained in patients with contractures and scoliosis, but
these tend to be unreliable Because length is important
in determining the weight-for-height
of the child, a
more accurate measure should be obtained (Dietz &
Kandini, 1989). Spender, Cronk, Charney, and Stall@
( 1989) have established procedures for measuring children with cerebral palsy by obtaining upper arm lengths
or lower leg lengths. Plotting these measurements on
specialized body-segment growth charts, the evaluator
is able to extrapolate lengths and thus determine appropriate weight for length ratios. Length, rather than

Behavioral
children

food refusal is not uncommon


with cerebral palsy.

in

lge. IS important in establishing appropriate growth


because it is well documented that children with handicaps are shorter than their same-aged, nonhandicapped
peers (Brizee et al., 1990; Dietz & Bandini, 1989; Frank
& Z&cl, 1988; Pipes & Glass, 1989).
Weight-for-length is obtained by plotting the childs
weight against its own length/height curve. This measurement is relatively independent of age and ethnic
group and thus is valuable in assessing the childs individual growth. This measurement enables the nurse
to compare the child to itself rather than to a normed
population. Optimal weight-for-length
ratio for each
child is equated with a point that falls within the 10th
to 75th percentiles on the NCHS graphs (Pinyerd,
1992).
Head circumference should be measured with a nonstretching tape, using the largest occipital-frontal circumference obtainable and then plotted on the head
circumference graphs. Abnormalities in head growth are
common in children with cerebral palsy because of insults occurring between conception and the first year of
life, and later changes may indicate other problems, such
as the development of hydrocephalus (Frank & Zeisel,
1988; Pinverd, 1992).

of Pediatric Health Care


Volume 8, Number 3

THE HISTORY DATA

Once an abnormal growth pattern is identified, a determination of the cause of the problem should begin
with a feeding history. A general description of the
mealtimes, who feeds the child, and when feedings generally occur, the food the child can and cannot eat, and
the length of time it takes to complete a feeding session
are significant. Information on spitting, choking, gagging, recent illnesses, and breathing problems should
be obtained. Questions regarding sleeping and elimination patterns help in identifying the related health
concerns that may be affecting appetite. Data on positioning and adaptations that must be made to accommodate the mealtime process are also significant. Any
past hospitalizations should be noted. If previous pneumonias have occurred, the child is at risk for reflux or
aspiration. If siblings or parents have a history of gastrointestinal or feeding problems, this should be noted
because inheritance of related disorders does occur. A
S-day dietary record is an accurate way to gather data
on total caloric intake and is preferable to a dietary recall
(Crump, 1987). Caloric intake can be calculated by a
dietitian who can assessthe adequacy of such essential
nutrients as protein and calcium.
A listing of all the medications that the child presently
takes may give clues as to potential sources of the poor
weight gain, because many medications cause upset
stomach and anorexia (Brizee et al., 1990; Dietz &
Bandini, 1989). If children have multiple caretakers,
such as occurs when baby-sitters or respite or child care
workers have the child for part of a day, the need to
determine when feedings are better and when they
seem to be less successful is important. The kind and
degree of motor impairment usually relate to the degree
of oromotor impairment.
m THE PHYSICAL ASSESSMENT

The childs disposition and the quality of the parentchild interaction can assist the practitioner in determining the overall level of contentment and bonding with
the child. The general appearance of the skin, hair, and
subcutaneous tissue often reflects the wellness level of
the child, The physical examination should include a
concern for the integrity of the oral cavity, the oral
hygiene, and presence or absence of teeth. The chest
should be auscultated for air movement, signs of fluid
present in the deeper airways, the depth and quality of
respiratory effort, and the presence of upper airway
congestion or obstruction. The abdominal examination
should determine the presence of bloating or timpani
or the presence of a fecal mass. Auscultation of bowel
sounds indicates hyperactive peristalsis or decreased motility. The rectal vault should be manually assessed if
constipation is suspected.
An assessment of the childs muscle tone, especially

Journal of Pediatric
May-June 1994

Health

Care

neck and trunk control, can give valuable information


on overall neuromotor development. In hypotonia the
resistance to movement is decreased, and the child is
floppy. In the child with spasticity, even though extremity muscle tone is significantly increased, the muscle
tone in the neck and trunk may be decreased with poor
head control. This results in improper positioning for
safe passage of food. The nurse practitioner may also
observe abnormal postures or persistent reflexes, such
as an asymmetric tonic neck reflex in a l-year-old, which
will alter the childs ability to be positioned appropriately for feedings.
Observations of the childs oromotor skills both apart
from and during feeding can be extremely informative.
The childs inability to swallow or chew during the office
observation should raise concern for the childs overall
ability to eat safely. In the younger or more affected
child, special attention should be given to the coordination of swallowing and breathing, so that the risk of
aspiration can be assessed.
Use of the laboratory should be considered if an
organic cause is suspected and if assessment of the degree of nutritional risk is needed (Dietz & Bandini,
1989). Baseline data such as complete blood count, total
protein and albumin, and electrolytes are useful. A stool
for pH/reducing substances/occult blood and parasites
is indicated if children are attending day care and have
a history of diarrhea. Screening for iron deficiency and
lead toxicity is indicated if impaired development, poor
appetite, or seizures of unknown cause are present. A
urinalysis to rule out asymptomatic urinary tract infection, tuberculin skin test, and chest roentgenography
are indicated if symptoms are suspect. At times a serum
ferratin, free etythropoietin, and/or zinc level may be
indicative of the severity of nutritional deficiencies (Brizee et al., 1990).

bservations of the childs oromotor skills


both apart from and during feeding can be
extremely informative.

Radiologic evaluations that may be helpful include


an upper gastrointestinal series, nuclear scintiscan,
and/ or a video feeding study. The upper gastrointestinal
series can evaluate the anatomy of the esophagus and
stomach, screen for GER, and give limited information
about oromotor and swallowing function. The scintiscan is a nuclear medicine study that can detect GER
through the cardiac sphincter, the rate of gastric emptying through the pyloric sphincter, and aspiration of
nuclear material into the lungs. The video feeding study
is a diagnostic test that incorporates the evaluative skills
of the radiologist and the oromotor therapist. The

Zickler

TABLE
velocities

Median

(50th

percentile)

O-6 mo
Weight
(mglday)
Length
(cm / mo)
Head circumference
(cm / mo)

23.0
2.8
1.4

& Dodge

postterm

6-12

mo

14.4
1.6
0.7

115

growth

12-24
6.8
1.0
0.2

mo

24-36

mo

5.5
0.7
0.1

Rates reflect mean of velocities for males and females combined.


Values are
rounded to the nearest tenth. Adapted from R. N. Baumgartner, A. F. Roche,
and J. H. Himes. Incremental
growth tables: Supplementary
to previously
published charts. Am/C/in Nutr, 43: 711, 1986. Note. From Growth Velocities
in Preterm and Postterm Infants. In H.W. Yogman (Ed). follow-up
Management
of the High-risk Infant, 1987, (p. 188). Boston: Little, Brown and Company.
Reprinted by permission.

childs ability to handle foods is observed by fluoroscopy


while the therapist feeds the child a variety of textures.
The different boluses of food are observed for their
pathway through the mouth and esophagus and into
the stomach (Fox, 1990). This test is extremely helpful
in determining the thickness and texture of foods that
the child can safely be fed.
. THERAPEUTIC INTERVENTIONS

Appropriate feeding recommendations are based on a


thorough, individualized assessment of the child. Caloric needs are specific for each child but may be estimated, based on the age, length, and weight of the child
(Table). For children who do not show proper weight
gain for age, caloric intake should be increased by first
increasing the volume of the feedings; if this is not
possible, then increasing the caloric density of the solids
and beverage should be tried. Caloric requirements per
kilogram of body weight for postterm infants with
growth delay can be estimated with the following
formula (Peterson & Frank, 1987): (120 kilocalories / kg x ideal weight in kg [ 50th percentile for corrected age]) /kg divided by actual weight of child. For
example, a 32-month-old boy weighs 10 kg today. On
the NCHS graph for boys, birth to 36 months, the 50th
percentile weight is 14 kg. Using the formula, (120
kilocalories/kg x 14 kg)/10 kg = 1680 calories/day,
divide this total by the number of feedings per day to
obtain the calories for each meal. It would be important
to incorporate the family into the plan of scheduling
feeding times.
When counseling families of children who are showing a decelerating rate of gain, it is important to review
the need for regular, frequent meals. Children thrive on
routine, and this is most noticeable at eating, sleeping,
and toileting times. Three balanced meals and two highcalorie snacks should be recommended. Children need
to eat often, not constantly. Most of the meal should
be consumed by the infant or child in 30 to 45 minutes.

Journal

116

Zickler

& Dodge

of Pediatric Health Care


Volume 8, Number 3

24 CALORIE! 02 FORMULA
13 OZ of formula CONCENTRATE Plus 9 OZ of water
* powdered formula can be used but it tends to mix unevenly and thus get less
con&&ant solutions
24 CALORIE/O2 WHOLE COWS MILK (WC&l)-VITAMIN D FORTIFIED
24 OZ WCM Plus 6 Tablespoons (Tbsp) of Polycose Powder
or
24 OZ WCM Plus 2 Tbsp of liiht Karo syrup
Infants under 12 months of age or under 10 kg should use formulas as milk
base liquid
l

27 CALORIE/ 02 FORMULA
24 Calories par oz formula plus 3 Tbsp Polycosa Powder
or
24 Calories par oz formula plus 25 cc Light Karo Syrup
27 CALORIE/ 02 WCM
24 OUNCES OF WCM plus 4 TBSP LIGHT KARO SYRUP
30 CALORIE/ 02 FORMULA
24 CALORIE per OZ FORMULA plus 3 Tbsp and 1 teaspoon of POLYCOSE
POWDER plus 1 TBSP VEGETABLE OIL
30 CALORIE/O2 WCM
24 OZ WCM plus 3 TBSP Karo plus 1TBSP VEGETABLE

B FIGURE 2 Increasing

calories

OIL

in beverages.

Eating and drinking between meals should be discouraged. Children should be properly positioned in a
high chair or child seat and not held in an adults lap.
Parents should make sure that the food selected is
appropriate for the childs level of oromotor functioning. Some assistance with taking in adequate quantities is often necessary until children are able to use a
spoon and fork easily, but any self-feeding that the
child can do should be encouraged. High-calorie milkbased beverages should be served first and then solids
because solids tend to fill up the stomach and decrease
appetite. The amount of juice or water that the child
drinks should be limited because these also fill the child
without adding needed protein and fats in the diet.
Finger foods that are cut in small pieces and are soft
enough to eat without lots of chewing are most appropriate for encouraging independence. Mealtime should
be free of distractions and conducted in the same location. Parents should ignore food refusals and temper
tantrums at meals but should praise the accomplishments of the child. Parents should try to keep mealtime
pleasant and comfortable for both themselves and the
child interacting. Food preparation and mealtimes can
be time consuming; if at all possible, both parents
should be encouraged to share in this responsibility, or

some other individual should be identified to assist the


primary caretaker.
For the child who cannot take in sufficient volume,
a number of ways exist to increase the caloric density
of foods (Figure 2). If the infant is breast-fed, the
pumped breast milk can be fortified with the addition
of a standard formula powder (0.75 teaspoons to each
2 ounces of breast milk increases the caloric density to
24 calories per ounce) or a commercial breast milk fortifier. Babies who are breast-fed should be put to the
breast first, allowed to nurse for 15 to 20 minutes and
then offered the fortified breast milk from a bottle.
If the child is under 1 year of age and is bottle-fed,
the caloric density of the formula can be increased by
using the formula concentrate and decreasing the standard amount of water that is added. Caloric density can
be increased gradually until the child has a weight gain.
If a formula concentration of more than 24 calories per
ounce (standard formula and whole cows milk are both
20 calories per ounce) is needed, the caloric density of
formula can be increased to 30 calories per ounce by
adding glucose polymer powder (Polycose; Ross Labs,
Columbus, Ohio) and vegetable oil. Care should be
used in concentrating formulas because the increased
solute load puts additional stress on the absorption,

Journal of Pediatric
May-June 1994

Health

Care

. FIGURE 3 The

Zickler

custom-fitted

orthodontic

plate

for

children.

(Photo

courtesy

of Brian

Sanders,

& Dodge

117

DDS,

MS.)

metabolism, and elimination of waste products. Written


and verbal validation of mixing instructions is important
to ensure safe mixing procedures.
When children are old enough to be placed on whole
cows milk, the calorie density of the milk can be increased by adding such basic ingredients as corn syrup
or instant breakfast mix. If children are eating solids,
the parent can add extra butter and sugar and sprinkle
Polycose powder on foods. Sometimes it is necessary
to puree the table foods in a blender to improve the
texture for the child. The extra butter and sugar can be
added to the blended mixture. However, until infants
and children are gaining adequately on either formula
or whole cows milk, solid food should be restricted, as
a means for introducing tastes and textures to the child
(Ahmann, 1986).
An occupational and speech and language therapist
can be consulted to develop an oromotor stimulation
program that is administered by the caretakers at mealtimes. The oromotor program consists of techniques for
supporting the mouth and jaw, rubbing the gums and
cheeks to increase sucking behaviors, and positioning
to decrease choking and gagging during mealtimes. The
occupational therapist can also customize equipment
needs such as seating systems, trays, head supports, and
adapted feeding utensils. Proper positioning enables
children with motor disabilities to overcome some of
the negative gravity that makes swallowing and chewing
difficult (Bower-Hulme, Shaver, Archer, Mullette, &
Eggert, 1987).
If drooling and poor oromotor coordination are present and the child is functioning at least at the 24- to
36-month range in development, a few pediodontists

are now trying to custom fit children for an orthodontic


plate that is designed to improve orofacial sensorymotor function (Figure 3). The orthodontic plate requires the parents/caretakers to work with the child
daily (Limbrock et al., 1990). Twice daily teeth brushing/oral care should be encouraged. If regular brushing
is a part of daily routine, it can minimize the gum hypertrophy caused by phenytoin and control the pyorrhea
that results when oral hygiene is omitted.
A number of medications can be used in the overall
management of children with suboptimal weight gain.
For children who are chronically constipated, a mild,
over-the-counter laxative such as senna or biscodyl
(Dulcolax) can establish regular elimination patterns.
The use of high-fiber foods can also help diminish constipation; but all high-fibre foods should be sprinkled
with sugar or butter if maximal calories are to be
achieved. In infants and children with documented reflux, along with proper positioning and thickening of
beverages, medications such as metochlopramide hydrochloride (Reglan) or bethanechol (Urocholine) can
be given to increase the lower esophageal pressure and
to improve the rate of gastric emptying. Reglan has
relatively few side effects (restlessness or lethargy), and
these are dosage dependent although parents should be
made aware of the unlikely occurrence of tardive dyskinesias. Children who are on long-term anticonvulsants such as diphenylhydantoin
(Dilantin) are at risk
for folate and vitamin D deficiency and require a multivitamin with minerals supplement (Brizee et al., 1990;
Dietz & Band& 1989).
If poor weight gain, oromotor dysfunction, and
chronic pneumonias persist in spite of medications, po-

lournal

118

Zickler

81 Dodge

sitioning adjustments, dietary and behavioral adaptations. the child may require gastrostomy supplementation. If the child has accompanying GER, the gastrostomy should be accomplished by surgical correction
of this problem with a Nissen fimdoplication or related
procedure (Rempel, Calwell, & Nelson, 1988; Shapiro,
Green, Krick, Allen, & Capute, 1986). This surgical
procedure is done by wrapping the esophagus into the
gastroesophogeal sphincter, tying a band around the
site, and inserting a gastrostomy tube directly into the

hildren thrive on routine, and this is most


noticeable at eating, sleeping, and toileting
times.

stomach. This surgery enables the child to swallow but


prevents the reflux of food and gastric contents back
into the esophagus. If the childs oromotor skills are
good, the child with a Nisscn fundoplication and gastrostomy tube may be fed by mouth, with the remainder
of the food not taken orally being given through the
gastrostomy tube.
In a child without GER the gastrostomy may be
placed endoscopically. When the child heals adequately
from the surgery (6 to 8 weeks), is growing well, and
has no further history of gagging or vomiting, a gastrostomy button can be inserted into the incision site.
The button lays close to the childs skin and allows for
easier fit of clothing and for less tugging and rubbing
from the child. If the child has such poor oromotor
dysfunction that oral feedings are contraindicated, the
gastrostomy tube may become the sole source of feeding
for the child.
ROLE OF THE PEDIATRIC
NURSE PRACTITIONER

The pediatric nurse practitioner (PNP) who works with


families and children must learn to recognize when children are not growing. At each office visit, the PNP has
the opportunity to weigh and measure the young child
and discuss the infants growth with the parents. The
use of the growth chart in visually depicting the childs
rate of gain can clarify how the baby is growing. If a
problem in gaining weight is present, general guidelines
for expected weight gain can be shared with parents. A
review of what the baby is doing developmentally from
visit to visit enables the PNP to clarifv misconceptions,
provide anticipatory guidance for the-next phase of eating behaviors, and assist parents in setting realistic expectations for their baby. A review of the infants readiness cues for hunger and satiety can help parents better
understand their infants needs and improve oral intake
(Carruth et al., 1993).

of Pediatric Health Care


Volume 8, Number
I

When feeding programs are designed for children, it


is important that the PNP help the family work out the
logistics of the plan. Families may need assistance with
obtaining additives such as Poiycose, mixing formulas
correctly, establishing schedules for feeding, and incorporating medications into the plan, or families may need
hints on making shopping lists before going to the store.
Besides counseling and writing out plans, the PNP may
need to contact a social worker to assist the family with
financial concerns. Compliance with dietary changes often requires alterations in the family activity schedule
and the family budget. A number of agencies can help
families with obtaining food.
A knowledge of the cultural and adaptive feeding
practices of the family can be helpful in revealing misconceptions. Humphrey
(1991) notes that parents
memories of their own parenting experiences arc strong
determinants to feeding practices. Denial that the child
is losing weight or at least not gaining weight can occur.
This can create a defensive response from the parents
when talking to the nurse. Alliance building with families of children with suboptimal growth is a challenge
because feeding is closely associated with good parenting (Ahmann, 1986; Humphry, 1991). Assisting
families with meeting the goals of the nutritional plan
necessitates ongoing and regular communication and a
supportive approach to suggestions.
The PNP should verify phone numbers and addresses
for fiu-ther follow-up. Initially the family may require
weekly contacts by phone or by home visit. As time
goes on and families become more confident, the number of contacts can be decreased. Recognition that the
parent is attempting to be a good parent should be
verbalized.
If children do not improve in spite of numerous contacts, a trial of a variety of therapeutic interventions,
and outside assists from community agencies, the PNP
must assesswhether noncompliance and inappropriate
parenting skills are present. When improvement in
growth does not occur in spite of compliance with the
therapeutic recommendations,
the severely impaired
child with cerebral palsy may need Nissen and gastrostomy tube surgery. Family adjustment to the presence
of a gastrostomy feeding tube may be especially difficult,
because it may represent a challenge to their sense of
adequacy as parents or a sign of the severity of the childs
disability. Family members may be fearful of using and
caring for the tube. Even though the family is taught
the care of the gastrostomy tube in the hospital, acceptance can be facilitated by using an experienced home
health nurse to assist with changing the tube, giving
medications, administering
feedings, and teaching
safety routines (Huddleston & Ferraro, 1991). Careful
monitoring of the childs rate of weight gain after the
Nissen and gastrostomy tube necessitates frequent fol-

Journal of Pediatric
May-June 1994

Health

Care

low-up evaluations because weight gain may be either


inadequate or excessive for the child. The family with
a new gastrostomy tube worries about the child becoming so heavy that the child can no longer be lifted or
carried. It is important for the PNP to monitor weight
gain and to adjust the dietary intake accordingly, to
reassure the family that surgery was the appropriate
therapy.
If behavioral issues such as food refusal, spitting, and
throwing and playing with food are a concern, the PNP
should provide behavioral modification routines such
as positive reinforcement and ignoring tactics. With
consistency and repetition the child will often begin to
accept and participate in mealtimes. When parental expectations are realistic and attainable, the parent feels
successful, and the child is happier. The goal for the
disruptive child should be the same goal as for a cooperative child: to participate fully in meals.
Because children with cerebral palsy are often cared
for by a number of medical disciplines, the PNP must
have knowledge of the concerns and goals for care of
the other disciplines. Recognition that the child is first
and foremost a child and that the special medical concerns impact on the overall ability of the family to attain
each of the medical goals is important. Helping coordinate care optimizes the outcomes for the child and
family.
n

CONCLUSION

Age-appropriate growth is important for the child with


cerebral palsy. Evaluating the adequacy of a childs
growth includes recognition of weight-for-length
discrepancies, s&optimal oral intake, oromotor dysfunction, medical concerns, excessive caloric demands, and
inappropriate parent-infant interactions. When history
and physical data are considered along with laboratory
and radiologic findings, the opportunity to intervene
with positive suggestions is present. The role of the PNP
in working with a young child with cerebral palsy encompasses the use of a variety of nurse practitioner skills.
Throughout the working relationship with the child and
family, the PNP makes ongoing assessments, mutually
plans with the family for positive outcomes, initiates
therapeutic recommendations, counsels and assists families with the implementation of the recommendations,
and evaluates the outcomes. The ultimate goal for every
child with cerebral palsy is to minimize the disability,
optimize the childs potential, and prevent unnecessary
complications of their neuromotor condition.
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CERTlFlCA-nQN FOR
PEDIATRK IdJRSE FRACTlTiONERS
The National Certification
Board of Pediatric Nurse practitioners and Nurses will administer the Ma&ma! Q&@krg
ExaRrinaPianfor Pe#Wic Nurse Frahher
Certik&on
on Octsber 14, iQ94,at sites throughout the United States.
Certification
provides:
* Recognition for professional competency to employers, consumers,
health care system
* Appropriate
credentials to state licensing boards
* Enhancement of professional mobility and financial gain
ralilnl
Certification

my
Board tiny

and others in the

1, 1934, and ends Aqpwt 10, 1994. Contact


for further information.
NATlONAL CERTlFlCATlON
BOARD OF PEDIATRK
NURSE PRACTITIONERS AND NURSES
4 16 Hungerford Drive, Suite 222
Rockville, MD 20850
(301)340-82

of Pediatric Health Care


Volume 8, Number 3

13

the National