Feeding Management of Children With Severe Cerebral Palsy

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Feeding Management of Children with Severe Cerebral Palsy and

Eating Impairment
Article in Physical & Occupational Therapy in Pediatrics · February 2003

DOI: 10.1080/J006v23n02_03 · Source: PubMed
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Feeding Management of Children
with Severe Cerebral Palsy
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and Eating Impairment:

An Exploratory Study
Erika G. Gisel
Marie-Josée Tessier
Guy Lapierre
Ernest Seidman
Eric Drouin
For personal use only.
Gaetan Filion
ABSTRACT. Some children with cerebral palsy and severe feeding

impairment experience pulmonary complications from aspiration and
gastroesophageal reflux. This exploratory study examined whether pul-
monary function would improve following one year of intervention with
Erika G. Gisel, PhD, OTR, erg, is Professor, School of Physical & Occupational Ther-
apy, McGill University, Montreal, Quebec. Marie-Josée Tessier, OT, erg, is Dysphagia
Specialist, Centre Montérégien en Réadaptation, Longueil, Quebec. Guy Lapierre, MD,
is Associate Professor, Department of Pediatrics, Division of Respirology, Ste. Justine
Hospital, Montreal, Quebec. Ernest Seidman, MD, FRCP(C), is Associate Professor, and
Eric Drouin, MD, FRCP(C), Department of Pediatrics, Division of Gastroenterology, is
Assistant Professor, Ste. Justine Hospital, Montreal, Quebec. Gaetan Filion, MD, MSc,
is Medical Director of Positioning Clinic, Department of Rehabilitation Medicine, Cen-
tre de Réadaptation Marie-Enfant, Hôpital Ste. Justine, Montreal, Quebec.
Address correspondence to: Erika G. Gisel, PhD, School of Physical & Occupational
Therapy, McGill University, 3630 Promenade Sir-William-Osler, Montreal, Quebec, H3G
1Y5, Canada (E-mail: erika.gisel@mcgill.ca).
This study was supported in part by grant No. R719-79 from the United Cerebral Palsy
Research and Educational Foundation and the American Occupational Therapy Founda-
tion grant No. 6680-1326 (Revision P&OTP 5-08-02).
Physical & Occupational Therapy in Pediatrics, Vol. 23(2) 2003
http://www.haworthpress.com/store/product.asp?sku=J006
 2003 by The Haworth Press, Inc. All rights reserved.
10.1300/J006v23n02_03 19
20 PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS
optimal positioning for feeding, control of gastroesophageal reflux and

use of food textures that would minimize aspiration from swallowing.
Two children showed a 28% and 45% improvement, respectively, in func-
tional residual capacity. One child experienced a 37% improvement in

total respiratory resistance and a 284% improvement in respiratory com-
pliance. All children gained sufficient weight to maintain their growth
trajectories but only one who was changed from oral to tube feeding due
to aspiration showed catch-up growth in length. One child showed patho-
logical gastroesophageal reflux that was controlled medically throughout
the study period. Although all children experienced pulmonary illnesses
during the one year of follow up, control of aspiration permitted a clini-
cally significant improvement of their pulmonary obstructive syndrome.
Further study is needed to more fully determine the effect of this treat-
ment approach on pulmonary function. [Article copies available for a fee
from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail ad-

dress: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.
com> © 2003 by The Haworth Press, Inc. All rights reserved.]
KEYWORDS. Dysphagia, malnutrition, pulmonary function, gastro-

esophageal reflux, positioning
Children with cerebral palsy (CP) and severe eating impairments

manifest difficulties with ingesting food as well as an inability to con-
sume enough calories to meet the demands of growth (Gisel & Patrick,
1988; Krick & VanDuyn, 1984; Patrick & Gisel, 1990; Shapiro, Green,
Krick, Allen, & Capute, 1986; Troughton & Hill, 2001). Severe feeding
problems are already apparent in infancy (Dahl, Thommessen, Rasmus-
sen, & Selberg, 1996; Reilly & Skuse, 1992) and persist throughout
childhood (Stallings, Charney, Davies, & Cronk, 1993), i.e., these chil-
dren do not “grow out” of them. There may be poor tolerance of feeds
with aspiration during swallowing (Galler, Ramsey, & Solimano, 1984;
Griggs, Jones, & Lee, 1989; Morton, Bonas, Fourie, & Minford, 1993;
Rogers, Arvedson, Buck, Smart, & Msall, 1994). Nocturnal coughing,
wheezy breathing and pneumonia may be pulmonary complications
from aspiration (Edebol-Tysk, 1989; Euler & Byrne, 1983; Euler et al.,
1979; Ramenofsky & Leape, 1981). Gastroesophageal reflux (GER)
may be associated with aspiration (Christie, O’Grady, & Mack, 1978;
Darling, McCauley, Leonidas, & Schwartz, 1978), and may be accom-
panied by vomiting (Dahl et al., 1996). There may be poor acceptance
Gisel et al. 21
of a variety of food textures, with absence or delayed weaning to table

foods (Reilly & Skuse, 1992). Many children are unable to feed them-
selves or to accept foods from different feeders. One of the conse-
quences of these multiple problems is caloric under nutrition (Patrick,

Boland, Stoski, & Murray, 1986; Patrick & Gisel, 1990; Stallings et al.,
1993). The effects of malnutrition on development are well known: im-
pairment of neurological development with ramifications for the physi-
cal and mental development of the child (Cravioto, DeLicardie, &
Birch, 1966; Dobbing, 1990), as well as the quality of life for the child
and caregiver (Evans, Evans, & Alberman, 1990; Sullivan, 1997).
The importance of positioning children with cerebral palsy to facili-
tate function, has long been recognized (Carrington, 1978; Christarella,
1975; Magnusson, 1964; Myhr & von Wendt, 1991; Myhr, von Wendt,
Norrlin, & Radell, 1995; Nwaobi, Brubaker, Cusick, & Sussman, 1983;
Pope, Bowes, & Booth, 1994; Reid & Sochaniwskyj, 1991). An impe-
tus to more carefully examine the relationship between positioning and

feeding has come from radiological studies showing that food aspira-
tion during swallowing may be minimized when an optimal position for
safe swallowing is chosen (Larnert & Ekberg, 1995; Morton et al.,
1993). However, we do not know as yet whether oral feeding over a lon-
ger period of time in a more optimal position will result in a decrease in
the frequency of pulmonary disease.
In the child with severe feeding impairment, specific food textures
are chosen to achieve two main goals. The first is to minimize the risk
for pulmonary disease from swallowing associated (Griggs et al., 1989;
Morton et al., 1993; Rogers et al., 1994) and/or GER associated aspira-
tion (Darling et al., 1978; Euler et al., 1979; Ramenofsky & Leape,
1981). The second goal is to decrease feeding effort so as to facilitate
adequate oral intake (Croft, 1992; Gisel, Birnbaum, & Schwartz, 1998;
Jones, 1989; Rogers, Arvedson, Msall, & Demerath, 1993). Food is pre-
pared in such a way that it flows slowly during the oral stage of inges-
tion and thereby allows some control by a tongue that may only be
capable of suckling (anterior-posterior) motions (Morton et al., 1993).
Thickening of liquids (Griggs et al., 1989) or pureeing of solid foods,
such as vegetables and meats, seem to meet these requirements. Purees
will reduce feeding effort (Croft, 1992) and thickened liquids and pu-
rees appear to reduce the frequency (Larnert & Ekberg, 1995; Rogers et
al., 1994) and the severity of aspiration (Larnert & Ekberg, 1995; Rog-
ers et al., 1994).
A multidisciplinary approach to the treatment of these children’s
complex health needs has been advocated (Darwish, 1999; Sullivan,
1997). It was the purpose of this exploratory study to recruit children

early, no older than 3 1/2 years, and to make full use of a multidisciplinary
team (respirologist, radiologist, gastroenterologist, physiatrist, nutri-
tionist, occupational therapist) for evaluation, treatment planning and a

one-year follow up. The team adopted a hierarchy for decision-making
that progressed from the least invasive to more aggressive interventions
only when all conservative means of treatment had been exhausted.
Thus, oral feeding was chosen when safe, positioning for feeding was
adjusted to optimize the safety of swallowing, and food textures were
modified to minimize the risk of aspiration. If oral feeding was not safe
(aspiration), naso-gastric feeding and/or gastrostomy feeding were con-
sidered. Gastroesophageal reflux was controlled medically. Only if
medical intervention failed were there plans to progress to surgical in-
tervention. Our rationale was that if aspiration from swallowing and
gastroesophageal reflux could be minimized or eliminated, then pulmo-
nary function should improve. Oral feeding in this population has not
been systematically examined with respect to its safety, and results of
the benefits of tube feeding are still contradictory (Strauss, Kastner,
Ashwal, & White, 1997; Strauss & Shavelle, 1998). To test our hypoth-
esis of an association between aspiration and pulmonary function the
following steps were taken: (a) swallowing was examined by video-
fluoroscopy by determining which food texture(s) (liquid, thick liquid,
tacky puree) minimized/eliminated aspiration and (b) the seating position
that minimized/eliminated aspiration was systematically determined;
(c) gastroesophageal reflux was determined by 24-hr pH-monitoring;
and (d) pulmonary function (dependent variable) was measured before
and after one year of intervention. The intervention consisted of a full
year of “optimal” positioning and feeding the food textures, during all
meals, that minimized/eliminated aspiration.
METHOD
Subjects
The three children, all girls, were selected based on the following cri-
teria: all were between 18 and 43 months of age. They entered the study
between June 1998 and February 1999. They all had a diagnosis of cere-
bral palsy (CP) with severe motor impairment and spastic tetraparesis.
They were dependent in all activities of daily living. All had experi-
enced at least one documented episode of pulmonary disease (pediatri-
Gisel et al. 23
cian’s record, hospital record) during the 12 months preceding the

study. All weighed less than the 5th centile in weight-for-age and had
not gained weight for 2 months prior to entry into the study. Ethics com-
mittee approval and parent consent was obtained prior to entry of the
children into this study.
Procedures
Examinations were performed at study entry, Month 0 (M0), and at

12 months (M12). During the first examination each child underwent
videofluoroscopy (VF) in a 90° upright and a 20°, 30°, or 45° reclined
position. Three food textures impregnated with barium sulfate were ad-
ministered: liquid, thickened liquid of nectar consistency, and puree of
a tacky consistency. Aspiration was defined as invasion of the trachea
below the vocal cords before, during or after the swallow (Rogers et al.,
1994). The change in position aimed to identify with which of the three
textures and positions aspiration could be minimized or eliminated
(Larnert & Ekberg, 1995). Exposure time was limited to a maximum of
5 minutes. The results of videofluoroscopy were assessed independ-
ently by the radiologist and EG, and in each case there was agreement
between the two examiners. During a second appointment a pulmonary
function test was performed. To obtain reliable results on the pulmo-
nary function test, children had to be free of any upper respiratory tract
infection for three weeks before testing. The test was administered un-
der sedation with trained personnel and the presence of a physician
(Gaultier, Fletcher, Beardsmore, England, & Motoyama, 1995). Guide-
lines by the American Academy of Pediatrics Committee on Drugs
(American Academy of Pediatrics Committee on Drugs, 1992) were
followed. Tidal breathing flow volume, functional residual capacity and
respiratory compliance/resistance were measured and results were ex-
pressed as a percentage of established norms. Following testing chil-
dren remained under observation until they were fully awake.
Patients and families were met thereafter by the gastroenterologist
for a physical examination and completed a questionnaire regarding
gastroesophageal reflux. Standard 24-hr esophageal pH-monitoring
followed, to identify possible gastroesophageal reflux. An ambulatory
pH telemetry system was used and the percentage of the total time that
the esophageal pH was < 4, also called reflux index (RI), was measured.
The reflux index above 6% is considered abnormal according to ac-
cepted recommendations (Boix-Ochoa, Lafuenta, & Gil-Vernet, 1978).
If gastroesophageal reflux was identified, children were treated medi-

cally, and returned for a second pH probe measurement 6 weeks follow-
ing onset of treatment.
Children were only excluded from the study if videofluoroscopy and

24-hr pH-monitoring results were negative. Under these conditions the
documented pulmonary dysfunction(s) may have resulted from causes
other than aspiration. Caregivers were reassured that their child would re-
ceive all other therapeutic services that were customary to the child’s care.
A third appointment was made for a nutritional evaluation and testing
of functional feeding skills within a week of the previously mentioned
tests (Gisel, 1994; Kenny et al., 1989). A three-day food intake history
served as the basis for nutritional evaluation (Guthrie & Crocetti, 1985;
Persson & Carlgren, 1984). Anthropometric measurements (weight,
length and skinfold thicknesses [triceps, subscapular], arm circumfer-
ence) were taken in triplicate and averaged. Intake calculations were

based on WHO recommendations (World Health Organization, 1985),
together with an adjustment formula for children with severe CP by
Krick et al. (Krick, Murphy, Markham, & Shapiro, 1992). A feeding
session followed nutritional evaluation. Each child was positioned in
her habitual seating device and offered a meal that was representative of
the child’s daily routine, but that was adjusted to the textures that mini-
mized aspiration based on VF. The feeding session was videotaped in
standard fashion (Gisel, 1988) and tapes analyzed later using the Func-
tional Feeding Assessment (Kenny et al., 1989); calculation of feeding
competence followed (Gisel, 1994). If the child’s main intake derived
from bottle-feeding, sucking skills were categorized as adequate, vari-
able or inadequate. Tapes were analyzed by two independent evalua-
tors. Agreement ranged between 88% and 100%.
On the same day, a fourth appointment involved an examination by a
physiatrist (MD) and seating/positioning specialist (OT), to determine
the child’s motor status, overall muscle tone and positioning needs. On
the basis of the results from VF and the motor evaluation, the child’s
seating device (wheelchair or stroller) was adjusted to allow seating
during meals so that aspiration would be minimized. This position did
not preclude other positions that were appropriate for other activities of
daily living, such as sitting more upright or reclining more for resting.
The total series of tests could extend over a period of 3 to 4 weeks, after
which the multidisciplinary team met to formulate a treatment plan.
Gisel et al. 25
Intervention
Treatment goals were tailored to each child’s specific needs but all
received the following intervention for 12 months:
1. using food textures that minimized or eliminated aspiration during

oral feeding based on VF results; and
2. positioning the child for each meal in the position that was shown
to minimize/eliminate aspiration during videofluoroscopy.
In addition, caloric content of the diet was maximized through the ad-
dition of fats or polycose to keep food volume to a minimum, but to per-
mit growth. This is considered standard care, and so is not unique to our
protocol. Oral-motor exercises were taught to mothers focussing on lip
closure, minimizing the bite reflex and retention of food during ante-
rior-posterior transport and swallowing. Such exercises do not substan-

tially influence weight gain (Ottenbacher, Hicks, Roark, & Swinea,
1983). Gastroesophageal reflux was controlled medically, and moni-
tored regularly by the gastroenterologist. Pulmonary status was moni-
tored regularly by the respirologist, and weight was monitored monthly
during the first 6 months and twice monthly during the second 6 months
of the study. Caloric and nutritional content was adjusted when neces-
sary. Compliance with the protocol was monitored through telephone
contacts in intervals of 2 months.
CASE REPORTS
Case 1
Evaluation
This 43-month-old girl had 2 medically documented episodes of

pneumonia in the 18 months before entry into this study. She had severe
spastic tetraplegia, asthma, and epilepsy whose control with medication
fluctuated. Bilateral ventricular peritoneal shunts were in place.
Pulmonary Function Tests showed a light to moderate obstructive
syndrome. Her total respiratory resistance was 39.9 cmH2O/L/sec,
205% of the predicted value. Her compliance was 1.9 ml/cmH2O/kg,
i.e., within normal limits, and her functional residual capacity was
slightly elevated to 328cc, 131% of the predicted value. Inhaled
broncho-dilators improved total resistance by 15%, whereas the func-

tional residual capacity decreased to 234cc, i.e., to 93% of the predicted
value.
Videofluoroscopy showed that she did not aspirate liquid barium (fed
by bottle), nectar type liquids nor purees that were easy flowing, or
thick. Thick puree was transported with moderate effort. The child let
all textures fall into the pharynx, while respiratory passages remained
open, and the swallow was initiated once a sizeable amount of food had
accumulated above the upper esophageal sphincter. Several swallows
of each food texture were taken without coughing. She swallowed best
in the 30° reclined position.
Gastroesophageal Reflux Evaluation responses to the reflux question-
naire were negative. Twenty-four-hour esophageal pH-monitoring was per-
formed according to protocol and revealed a RI of 7.1% (normal < 6%).
Omeprazole 1.4 mg/kg/day was prescribed and a second esophageal

pH-monitoring 6 weeks later confirmed normalization of the RI (4.1%).
Examination of Postural Control indicated a child with lack of head
and trunk control, hypotonus in the axial skeleton and spasticity in both
upper and lower extremities. She had a wheelchair with maximum pel-
vic and thoracic supports, shoulder straps as well as a head support that
allowed her head to be flexed in a 30° chin-tuck position.
Nutritional Evaluation showed a weight of 10.94kg, and a length
of 91.8cm. Both measurements were below the 3rd centile of the
NCHS growth charts. Triceps skinfolds measured 3.2 (< 3rd centile)
and subscapular skinfolds 4.3 (< 10th centile). Arm circumference
measured 130mm. A 3-day food intake history showed that the caloric
content of the food prepared was 150% of her daily need. Thus, even if
one-third of the food were lost due to spillage her daily caloric intake
would be adequate.
Functional Feeding Skills based on competence, where 100% repre-
sents normal function (Gisel & Alphonce, 1995), showed a child with
severe impairment (Table 3) of oral-motor skills such as spoon feeding
(40.7%), cup drinking (14.3%), swallowing (54.2%) and clearing the
mouth during swallowing (41.7%). Feeding skills were characterized
by a hypersensitive reaction to food at the onset of feeding, exaggerated
mouth opening in anticipation of food, poor lip closure on the spoon, a
persistent bite reflex on the spoon, labored food transport, poor coordi-
nation and delayed initiation of the swallow. Suckling on the bottle was
variable to inadequate. She occasionally regurgitated or vomited after
meals. A summary of evaluations is presented in Table 1.
Gisel et al. 27
TABLE 1. Clinical Description of Children with CP and Severe Feeding Impair-

ment
Evaluations Child #1 Child #2 Child #3

Pulmonary Function
M0 mild to moderate severe obstructive mild to moderate
obstructive syndrome obstructive syndrome
syndrome
M12 moderate obstructive did not return for normal to mild
syndrome testing obstructive syndrome
Videofluoroscopy
M0 no aspiration observed, aspiration of liquids aspiration of thin and
but risk of aspiration and purees nectar-type liquids
and thin purees
M12 unable to interpret aspiration of puree aspiration of liquid and
results and soft solids honey-type liquid
Gastroesophageal reflux
M0 reflux no reflux no reflux, but “some

reflux episodes”
M12 symptom-free symptom-free symptom-free
Positioning
M0 maximum support maximum support maximum support
prefers caregiver difficulty with head
control
M12 maximum support maximum support maximum support
Seizures
M0 controlled (polytherapy; controlled (polytherapy; controlled;
5 different drugs) 3 different drugs) 2 different drugs
M12 poorly controlled status epilepticus controlled; 2 different
(polytherapy; 4 different controlled (polytherapy; drugs
drugs) 3 different drugs)
M0 = Month 0, onset of study; M12 = Month 12, end of study
Clinical Course During the One-Year Study Period
The child was hospitalized twice during the study period for pulmo-
nary disease. The first was due to pneumonia in month 3, and the second
due to a reaction to excessive dust in the home caused by major renova-
tions. The child responded well to the medication for reflux. Regurgita-
tion and vomiting stopped completely. Although feeding in the wheelchair
with a 30° inclination was the preferred method, the child responded
more positively to the presentation of food when she was held in the lap
of her caregiver. For this reason containment techniques were practiced
with the caregiver, to optimize chin tuck and the 30° reclined position.
Throughout the course of the study the child was on a regime of medica-
tions to control seizures (phenobarbital, valproate, vigabatrin, gabapentin

and clonazepam), some to be taken twice, others 3 times per day. To-
ward month 11 of the study the child started experiencing increased sei-
zure activity that was no longer controlled by the medication. She was
admitted to hospital to identify the foci of this seizure activity and to ad-
just medications. The dose of gabapentin was increased and vigabatrin
eliminated.
Evaluation Following the 1-Year Study Period
Pulmonary Function Tests showed a total respiratory resistance of

37.0cmH2O/L/sec, and a compliance of 2.0ml/cmH2O/kg, no change in
either measurement from M0. The functional residual capacity was
279cc, a decrease (improvement) of 17.6% from the M0 value.
Examination of Postural Control. The wheelchair was modified to
accommodate her growth and to maintain optimal support for function.

Responses remained unchanged.
Gastroesophageal Reflux Evaluation. A clinical examination indi-
cated resolution of the problem with reflux and so, the 24-hour pH probe
measurement was not repeated. Medication was continued throughout
the study, and plans were to gradually phase it out over a 2- to 3-month
period.
Nutritional Evaluation showed a weight gain of 2.0kg, and a gain in
length of 2.7cm. This placed her below the 3rd centile for weight and
height on the NCHS charts. However, when compared on the Krick
charts (Krick, Murphy-Miller, Zeger, & Wright, 1996) she was below the
50th centile for children with CP at the onset and now was above the 50th
centile, a small catch-up in weight. Her length was at the 50th centile and
fell slightly below the 50th centile over the one-year study period. Her
arm circumference increased by 20mm to 150mm. Table 2 illustrates the
changes in anthropometric measurements over the study period.
Functional Feeding Skills had slightly improved: spoon-feeding
(+5.6%), cup drinking (+7.1%), swallowing (+12.5%), but clearing re-
mained the same (41.7%). Results are illustrated in Table 3.
Case 2
Evaluation
This 43-month-old girl had severe spastic tetraplegia with diffuse se-
vere cerebral atrophy, microcephaly (< 3rd centile) and epilepsy that
Gisel et al. 29
TABLE 2. Anthropometric Measurements of Children with CP and Severe Feed-

ing Impairment
Child #1 Child #2 Child #3

M0 M12 M0 M12 M0 M12
Weight (kg) 10.94 12.90 12.04 13.68 7.74 9.60

(CP centile) < 50th > 50th 60th 60th 50th 50th
Length (cm) 91.8 94.5 97.0 98.3 72.0 86.0

(CP centile) 50th < 50th 80th 55th 50th 62nd
Skinfolds
Triceps 3.2 4.3 6.0 4.2 10.0 4.0
Subscapular 4.2 5.2 5.2 4.9 10.0 4.4
Arm Circ. (mm) 130 150 141 135 150 135
M0 = Month 0, onset of study; M12 = Month 12, end of study; Arm Circ. = Arm circumference
CP centile: Centiles from Krick et al., J. Am. Diet. Assoc. 96:680-85, 1996
TABLE 3. Functional Feeding Skills of Children with CP and Severe Feeding

Impairment
Child #1 Child #2 Child #3

Competence (%) M0 M12 M0 M12 M0 M12
Spoon feeding
Normal 40.7 46.3 20.4 22.2 variable variable
Abnormal 62.5 75.0 37.5 41.7 - -
Cup-drinking
Normal 14.3 21.4 - - - -
Abnormal 45.8 83.3 - - - -
Swallowing
Normal 54.2 66.7 54.2 37.5 adequate variable
Abnormal 41.7 41.7 20.8 25.0
Clearing 41.7 41.7 41.7 - inadequate inadequate
M0 = Month 0, onset of study; M12 = Month 12, end of study

was controlled with medication. She followed a course of nitrazepam,

valproate and vigabatrin. Her adenoid and palatine tonsils had been re-
moved at 36 months of age. The child had several severe episodes of
grippe the year before entry to our study. She was treated symptomati-
cally and received inhaled salbutamol during each episode to facilitate
respiration.
Pulmonary Function Tests showed a severe obstructive syndrome.
Her total respiratory resistance was 53cmH2O/l/sec, i.e., 311% of the
predicted value. Her compliance was 0.52ml/cmH2O/kg, a value well-
below normal range and her functional residual capacity was 149cc,
which is 56% of the predicted value. Bronchodilators had no effect on
these measurements.
Videofluoroscopy showed that she aspirated liquid barium offered
from a cup. She did not cough. Liquid from a syringe escaped prema-
turely into the vallecula, was swallowed but each swallow had nasal
penetration. Yogurt consistency puree was swallowed safely but each
swallow showed some nasal penetration. Granular puree was offered
from a spoon. When given in small amounts, safe swallows followed,
but many had some nasal penetration. There was food residue after the
swallow. On one occasion food residue was aspirated following re-
sumption of breathing. The 30° inclination was better than 45° in terms
of safety and adequacy of the swallow.
Gastroesophageal Reflux Evaluation. Responses to the reflux ques-
tionnaire indicated occasional regurgitation but the 24-hr esophageal
pH-monitoring was normal (0.9%). No pharmacological treatment was
prescribed.
Examination of Postural Control showed poor head control, lack of
trunk control, axial hypotonia, and spasticity in the upper and lower ex-
tremities. The child had a wheelchair with pelvic and thoracic supports
and shoulder straps. The head was supported with a commercial head
band. Feet and upper extremities were adequately supported.
Nutritional Evaluation showed a weight of 12.04kg, and length of
97.0cm. These measurements were below the 5th and 25th centiles, re-
spectively, of the NCHS growth charts. Triceps skinfolds measured 6.1
(< 3rd centile) and subscapular skinfolds 5.2 (< 25th centile). Her arm
circumference measured 141mm.
Functional Feeding Skills showed a child with severe impairment in
spoon feeding (20.4%), inability to drink from a cup, swallowing
(54.2%) and clearing the mouth during swallowing (41.7%). Feeding
skills were characterized by delayed mouth opening to the approaching
Gisel et al. 31
feeding utensil, absence of lip contact on the spoon, persistent bite re-
flex on the spoon, and poor anterior-posterior transport. The coordina-
tion of sucking, swallowing and breathing for liquids and purees was
poor. There was marked food loss during feeding, but little food reten-
tion in the mouth following the swallow.
Clinical Course During the 1-Year Study Period
The child’s wheelchair was adjusted to meet current size and posi-
tioning needs. The mother was encouraged to have at least liquids fed
by tube to minimize the risk of aspiration and pulmonary complications
based on the evidence of aspiration from videofluoroscopy. However,
the mother insisted on oral feeding. Therefore, the mother was shown
jaw stabilization and lip closure techniques. Slow pacing during feeding
was practiced with the mother. Liquids were offered by syringe to con-
trol the amounts of fluid offered per bolus. A spout cup was introduced,
and proved to cut down on fluid loss. However, the mother did not use it
consistently. Homogeneous purees were emphasized to minimize the
risk of aspiration. The mother expressed concern regarding chronic
constipation of the child.
Due to very limited resources it was difficult for this mother to keep
her appointments and to comply with the requirements of the protocol.
During month 9 of the study, the child developed status epilepticus and
was admitted to hospital. The dose of valproate and vigabatrin was in-
creased. Two weeks following discharge the child developed febrile sei-
zures with vomiting. During one such episode she aspirated. She was
re-hospitalized with pneumonia. The child recovered from this life-threat-
ening episode and completed her study period.
The mother did not return for pulmonary function tests despite re-
peated attempts at scheduling.
Examination of Postural Control. Responses remained unchanged.
Her wheelchair provided sufficient support to optimize head control. A
standing table was provided to allow short periods in the upright posi-
tion during the day.
Videofluoroscopy was unchanged from the M0 evaluation. There
was aspiration of soft solids and marked aspiration of purees. Both re-
sulted in coughing. Examination was terminated before liquids could be
attempted.
Gastroesophageal Reflux Examination did not reveal any symptoms.

No other pH probe examination was performed.
Nutritional Evaluation. The child gained 1.6kg in weight, and 1.3cm
in length (Table 2). Both measures are below the 5th centile on the
NCHS charts. Comparison with the CP charts (Krick et al., 1996) indi-
cated that the child maintained weight at the 60th centile throughout the
study. Her length measurements were at the 80th centile at the begin-
ning but fell to the 55th centile at the end of the study. Her arm circum-
ference measures decreased by 6mm to 135mm.
Functional Feeding Skills remained unchanged or had declined (Ta-
ble 3): spoon-feeding (+1.8%), swallowing (⫺16.7%), and clearing the
mouth (41.7%; unchanged).
Case 3
Evaluation
This 14-month-old girl had severe spastic tetraplegia with multifocal

cerebral atrophy (CT scan) and epilepsy that was controlled with medi-
cation. She followed a course of nitrazepam and vigabatrin throughout
the study. There were 3 documented episodes of pneumonia during the
year before entry into the study.
Pulmonary Function Tests showed a light to moderate obstructive
syndrome. Her total respiratory resistance was 68.0cmH2O/L/sec,
194% of the predicted value. Her compliance was low with a value of
0.65ml/cmH2O/kg. Her functional residual capacity was 298cc, 176%
of the predicted value. Inhaled bronchodilators did not change these
values.
Videofluoroscopy in a 20° and 45° position indicated that there was
marked aspiration of thin liquids, nectar type liquids and thin puree.
Thick puree was swallowed safely. There was delayed initiation of the
swallow reflex. Better control was observed in the 20° reclined position.
Gastroesophageal Reflux Evaluation. Responses to the reflux ques-
tionnaire were negative but esophageal pH monitoring showed 18 epi-
sodes of reflux with pH < 4.0, although each episode was less than 5
seconds. This amounted to 1.1% of established norms. Hence, results
were deemed negative.
Examination of Postural Control showed lack of head and trunk con-
trol and axial hypotonia. Both upper and lower extremities showed
marked spasticity. She had a customized wheelchair with maximum
Gisel et al. 33
pelvic, thoracic and head support. Feet were well supported and arms
were supported on a lap tray.
Nutritional Evaluation showed a weight of 7.74kg, and a length of
72.0cm. Both measurements were below the 3rd centile of the NCHS
growth charts. Both triceps and subscapular skinfolds measured 10, the
25th and between the 75th and 90th centiles, respectively. Her arm cir-
cumference measured 150mm (Table 2).
Functional Feeding Skills. Evaluation showed a child with a variable
response to spoon feeding, inability to drink from a cup, poor ability to
swallow and inadequate ability to clear the mouth during swallowing.
Mouth opening in response to food and use of lips to strip food from the
spoon were not always consistent. Anterior-posterior transport was in a
suckling pattern. There was marked food loss. Suckling from a bottle
appeared easier at the onset of a feed, with little fluid loss, but fatigue set
in quickly.
Clinical Course During the 1-Year Study Period
Due to pneumonia with hospitalization during month 1 of the study

period, and the evidence of aspiration from VF, the team recommended
tube feeding to the parents. Nasogastric feeding was instituted in month 2.
The child rapidly gained weight and pulmonary complications stopped.
Discussion of replacement of the nasogastric tube with a gastrostomy
began in month 4, once it was clear that tube feeding was well tolerated.
The mother continued to offer a few spoonfuls of puree throughout the
day to maintain oral-motor skills associated with eating and swallow-
ing. A percutaneous gastrostomy was performed at month 7 and the
child was gastrostomy fed for the remainder of the study period. The
volume of the formula used for gastrostomy feeding was tailored to the
growth needs of the child. Small amounts of pablum were offered by
mouth once daily, preceding one of the three daily bolus feeds. The
mother reported that the child now slept through the night and that she
appeared to be more alert and available for social interaction during the
day. In month 8 the child was hospitalized with severe bronchitis. Ex-
amination confirmed that it was not due to aspiration.
In month 9 the mother expressed concern about aspiration because
the child coughed regularly when given hashed food. All oral feeds
were stopped in month 11, because of repeated concern about aspiration
and occasional vomiting. A prokinetic (Cisapride 0.2 mg/kg/4 times a
day) was prescribed by the gastroenterologist. Despite this course of
action, the child was hospitalized with pneumonia in month 12 and

treated with antibiotics and oxygen.
Pulmonary Function Tests showed a total respiratory resistance of

43.0cmH2O/L/sec, 179% of the predicted value, representing an improve-
ment of 37% over the M0 value. Her compliance of 2.5ml/cmH2O/kg was
now within normal limits. Her functional residual capacity was 162cc,
81% of the predicted value at the lower limit of normal.
Videofluoroscopy showed that pablum was well accepted but oral
transport was very difficult with repeated pumping movements of the
tongue. Once the swallow was initiated timing was normal and prompt
clearing of the pharynx followed. Thickened liquid of a honey consis-
tency was easier to transport, but some was aspirated. Liquid barium
was attempted but the child aspirated.

Gastroesophageal Reflux Evaluation. Symptoms of reflux were nega-
tive, and Cisapride prescribed at month 9 didn’t improve infrequent epi-
sodes of vomiting. The parent stopped giving the medication within a
month. Twenty-four hour esophageal pH-monitoring was not repeated.
Examination of Postural Control. Wheelchair adjustments were per-
formed after months 6, 10, and 12. Seating was adjusted to accommo-
date the child’s marked growth.
Nutritional Evaluation. The child gained 1.86kg in weight and 14cm
in length (Table 2). Both measures remained below the 3rd centile on
the NCHS growth charts. However, weight was maintained at the 50th
centile and height showed a catch-up from the 50th to the 62nd centile
on the CP charts (Krick et al., 1996). Her triceps and subscapular
skinfolds measured 4.0 (< 3rd centile) and 4.4 (10th centile), respec-
tively. Her arm circumference decreased 15mm to 135mm.
Functional Feeding Skills indicated that anticipation of food was still
variable, lip control and anterior-posterior transport were still inade-
quate, but the coordination of suck-swallow-breath was adequate. Plans
were to gradually reintroduce purees to decrease oral sensitivity and to
facilitate oral transport in view of preserving adequate saliva control.
DISCUSSION
The pulmonary function of the two children who completed their

tests before and after one year of intervention indicated a light to moder-
Gisel et al. 35
ate obstructive syndrome in both children at the onset of the study pe-
riod. Child #2 showed a severe obstructive syndrome, but her progress
remains unknown. Child #1 showed no change in compliance or total
respiratory resistance, but had a clinically significant improvement in

functional residual capacity (28%). Child #3 experienced a 37% de-
crease (improvement) in total respiratory resistance, a 284% improve-
ment in her compliance and 45% improvement in functional residual
capacity. These results suggest that control of aspiration may amelio-
rate the pulmonary obstructive syndromes of these children through a
decrease in their functional residual capacity. This would allow chil-
dren to breathe with less effort, through an increase in gas exchange that
may facilitate more normal breathing. While earlier work demonstrated
an immediate beneficial effect of positioning by minimizing or elimi-
nating aspiration (Larnert & Ekberg, 1995), our preliminary results sug-
gest that pulmonary function can be improved over a period of one year,
by maintaining the best position and choice of food textures during meals
that minimize aspiration from swallowing and/or gastroesophageal re-
flux. Our results further suggest that measurements of pulmonary func-
tion appear to be better indicators of a child’s pulmonary health, rather
than the frequency of pulmonary illnesses over a given time period.
Consistent positioning over extended periods of time is facilitated by
the current generation of wheelchairs that have adjustable reclining
mechanisms. Although the improvement in pulmonary function in child
#1 and #3 may not be attributed solely to positioning and food texture
modification, it is likely that the combination of controlling aspiration
from swallowing and GER and the maintenance of weight, rather than
the expected weight loss (Gisel & Alphonce, 1995), and linear growth
contributed to the general improvement of these children’s health. It
must also be emphasized that the health of this group of children is so
precarious that manipulation of one variable at a time to more systemat-
ically evaluate the contribution of each cannot be justified ethically.
Control of aspiration from swallowing was not fully possible in chil-
dren #2 and #3. There is no good evidence that oral-motor exercises can
reduce or eliminate aspiration during swallowing in children (Gisel,
Applegate-Ferrante, Benson, & Bosma, 1996), but it is known that aspi-
ration of liquids is much more frequent than that of solids (Gisel et al.,
1996; Griggs et al., 1989; Rogers et al., 1994). Tanigouchi and Moyer
(1994) showed that aspiration of liquids during oral ingestion had a sub-
stantially lower risk for developing pneumonia compared to the aspira-
tion of purees. However, the frequency with which severely affected
children aspirated liquids was much higher compared to the aspiration
of purees. Other studies corroborate these findings (Larnert & Ekberg,

1995; Rogers et al., 1994). It is not known as yet, whether occasional as-
piration of small amounts of solids is as detrimental to the lungs as
chronic, persistent aspiration of liquids. Oral feeding of thick purees

and tube feeding of liquids may minimize the risk of aspiration. Such an
approach may also be more acceptable to caregivers who emphasize
that oral feeding often is the only socially meaningful way for interac-
tion with severely affected children. This approach has the added ad-
vantage of providing sufficient fluids to minimize the problem of
constipation that is associated with excessive liquid loss from poor
oral-motor control and that many caregivers complain of (Agnarsson,
Warde, McCarthy, Clayden, & Evans, 1993; Staiano et al., 2000).
Control of GER and its risk for aspiration was achieved medically in
child #1. A cause and effect relationship between gastroesophageal re-
flux and pulmonary problems is difficult to establish (Orenstein &
Orenstein, 1988). This is partly due to the limitations of the available re-
search methods to unequivocally determine such an association (Christie
et al., 1978; Hoyoux, Forget, Lambrechts, & Geubelle, 1985; Orenstein,
Magill, & Brooks, 1987; Orenstein & Orenstein, 1988). In infants who
had GER and no other medical complications, positioning, thickening
of feeds and more frequent meals were shown to be effective interven-
tions (Orenstein et al., 1987; Orenstein & Whitington, 1983; Shepherd,
Wren, Evans, Lander, & Ong, 1987). However, for infants with GER
and neurological deficits more aggressive interventions such as tube
feeding may be indicated (Christie et al., 1978; Ferry, Selby, & Pietro,
1983). Pharmacological therapy of GER is based on acid reduction.
Such therapy reduces esophageal acid exposure and can improve
GER-related respiratory disorders. A proton pump inhibitor, such as
Omeprazole, is one of the most effective acid suppressants (Wolfe &
Sachs, 2000). Daily doses required to normalize esophageal pH-moni-
toring are between 0.7 to 3.3 mg/kg/d (Andersson et al., 2000).
Although gastrostomy feeding is used widely for children with severe
feeding impairments, older children with GER and documented recurrent
vomiting and/or pulmonary aspiration may experience complications from
gastrostomy feeding (Heine, Reddihough, & Catto-Smith, 1995; Mollitt,
Golloday, & Seibert, 1985; Sondheimer & Morris, 1979). The surgical
procedures are not without risk and post-operative complications re-
ported range from 39% (McGrath, Splaingard, Alba, Kaufman, &
Glicklick, 1992) to 59% (Byrne et al., 1982; Turnage, Oldham, Coran, &
Blane, 1989). Children who are younger than 2 years of age respond
better to the medical or surgical treatment for GER (Christie et al.,
Gisel et al. 37
1978; Rempel, Colwell, & Nelson, 1988; Sanders et al., 1990; Shepherd
et al., 1987). These findings suggest that intervention in infants and
young children may be less risky than in older children. This was our
reason for selecting children no older than 3 1/2 years of age. Young
children may still be in better health than the older children. Repeated
bouts of GER, pulmonary disease and longer standing malnutrition may
put the older children at greater risk for the more aggressive types of in-
tervention.
In terms of growth measures, all three children maintained their
weight centile of M0, with child #1 showing a small catch-up. In terms
of length, only one child (#3) showed a catch-up from the 50th to the
60th centile. Children #1 and #2 registered a small drop in centile
length. Several factors may have contributed to these results. Growth
stunting has been described by Stallings et al. (Stallings et al., 1993) in
children as young as 2 years of age. Hence, stunting may have been of
longer standing in children #1 and #2 who were older than child #3.
Child #3 was fed by gastrostomy during the second half of the study.
Thus, her nutritional intake was controlled to maintain her weight tra-
jectory, which may have permitted her marked growth (14cm). Al-
though caloric intake was calculated to meet growth needs of children #1
and #2, they were older than child #3 and so, the total volume of daily
intake was larger and may have been more difficult to attain. Food loss
due to poor oral-motor skills may have contributed to lower intake than
what had been calculated (Patrick et al., 1986). Age related oral-motor
skills and growth needs have been discussed extensively by Gisel and
collaborators (Gisel, Applegate-Ferrante, Benson, & Bosma, 1995;
Gisel et al., 1996; Gisel & Patrick, 1988; Patrick & Gisel, 1990).
Skinfold thicknesses and arm circumference were consistent with the
growth pattern of each child. Child #1 showed a marked decline of both
the triceps (25th to 3rd centile) and subscapular skinfold thickness (75th
to 3rd centile), which is consistent with the child’s rapid growth in
length. Child #2 showed a marked decline from the 3rd centile in her tri-
ceps skinfold between month 6 and 12 and child #3 maintained her tra-
jectory but substantially below the 3rd centile. Both child #1 and #2
maintained their subscapular skinfold thickness at the 25th and 5th
centile, respectively.
Considering the fragile health of the children, maintaining their
growth trajectories is quite a challenge. However, there is no doubt that
supporting their health had an effect on the perceived quality of life of
the family. The caregiver of child #1 indicated to the research team “it
was the first Christmas in 3 years that she did not spend in the hospital
with the child.” The mother of child #3 noted that the child slept through
the night without waking and was more alert and ready for social inter-
action. She also reported that although her child was hospitalized on
two occasions during the study period, the periods were shorter than be-
fore and the child seemed to be more robust to cope with illness. The re-
lation of nutritional status and immune competence is well documented
(Chandra, 1983), and may support the mother’s observations.
The difficulty of dealing with growth and nutrition as well as the pul-
monary status of these children is further challenged by the frequent
presence of epilepsy. All children in this study were taking a combina-
tion of drugs aiming to control frequent seizure activity. While the
mechanisms of action of many of these drugs is better understood today
(Ivaneinen & Alvarez, 2000), much of the work with the new anti-epi-
leptic drugs has been done in adults and the effects on children, particu-
larly those with intellectual disabilities, is still poorly understood
(Alvarez, Besag, & Ivaneinen, 1998). A population-based study in

mentally retarded children in Finland (Airaksinen et al., 2000) found
that the probability of epilepsy was increased five fold in children with
severe mental retardation. The association with cerebral palsy further
increased the risk for epilepsy. Forsgren, Edvinson, Nystrom and Blomquist
(1996) have documented that epilepsy in individuals with intellectual
disability is associated with a significant increase in mortality. Hence,
control of epilepsy may also contribute substantially to better survival
of this population.
The impact on the quality of services by a coordinated multidisci-
plinary team approach should not be underestimated. Our children re-
ceived care in three different institutions: one was the hospital where
medical procedures were performed; the others were the rehabilitation
hospital and community rehabilitation center where follow up for the
rehabilitation services occurred. Without the concerted effort of the
team, communication between professionals at the different institutions
is often described as fragmented and lacking coordination. Caregivers
often expressed frustration to team members that previous to our team
management they felt “lost in the system.” Our multidisciplinary team
met regularly: first, at the time of treatment planning. The contributions
by each of the professionals to the care of a child with multiple prob-
lems led to a greater understanding of the impact of each decision on the
child and the caregivers. The team met again when health problems of
the child interrupted the routine course of the treatment protocol (i.e.,
decisions for NG or gastrostomy tube placement). Discharge planning,
as a team, at the end of the study ensured that services in the community
Gisel et al. 39
could continue without disruption. The objective measurement of the

impact of a multidisciplinary team approach on the health of the child
with multiple problems, as well as the caregivers, deserves further
study.
Finally, the question of life expectancy for these children must be ad-
dressed. Evans et al. (1990) noted that immobility and severe mental re-
tardation are the strongest predictors for mortality. Study of a cohort
with birth years from 1970 to 1979 indicated that 70% of their cohort
with quadriplegia lived to adulthood. The authors attributed the high
survival rate to new medications, particularly those for seizure control,
better diet and care as well as environment. Williams and Alberman
(1998) reviewed a cohort with birth years from 1980 to 1987 and found
a survival rate of 93% over a 15-year period. If there was a second diag-
nosis survival was still 86%. Of those children who died, 51% of the
deaths were due to respiratory problems. Thus, a main contributor to

mortality is pulmonary disease. The increased survival rates impose the
question of quality of life for the child, the need for facilitation of care
for the caregiver, as well as the timing of such care on the professional
(Darwish, 1999). Work by Strauss et al. (1997) indicates that in severely
disabled children the risk of mortality is not increased with tube feeding
when confounding variables were controlled in a multivariate analysis.
Thus, the question remains whether morbidity and mortality can be re-
duced through early intervention by preventing pulmonary disease/com-
plications. Our pilot data suggest that pulmonary function can indeed be
improved, even if pulmonary disease cannot be fully eliminated. A
study using the approach reported here seems to be warranted to exam-
ine this question more fully.
REFERENCES
Agnarsson, U., Warde, C., McCarthy, G., Clayden, G. S., & Evans, N. (1993).
Anorectal function of children with neurological problems. II: Cerebral palsy. De-
velopmental Medicine and Child Neurology, 35(10), 903-908.
Airaksinen, E. M., Matilainen, R., Mononen, T., Mustonen, K., Partanen, J., Jokela, V.,
& Halonen, P. (2000). A population-based study on epilepsy in mentally retarded
children. Epilepsia, 41, 1214-1220.
Alvarez, N., Besag, F., & Ivaneinen, M. (1998). Use of antiepileptic drugs in the treat-
ment of epilepsy in people with intellectual disability. Journal of Intellectual Dis-
ability Research, 42(Supplement 1), 1-15.
American Academy of Pediatrics Committee on Drugs. (1992). Guidelines for moni-

toring and management of pediatric patients during and after sedation and thera-
peutic procedures. Pediatrics, 89, 1110-1115.
Andersson, T., Lundborg, P., Radke, M., Dalvag, A., Behrens, R., Becker, M.,
Goethberg, C., Hassall, E., Shepherd, R., Marcon, M., Martin, S., Koletzo, S., &
Drouin, E. (2000). Pharmacokinetics of orally administered omeprazole in chil-
dren. American Journal of Gastroenterology, 95, 3101-3106.
Boix-Ochoa, J., Lafuenta, J. M., & Gil-Vernet, J. M. (1978). Twenty-four hour esophageal
pH monitoring in gastroesophageal reflux. Journal of Pediatric Surgery, 96, 74-78.
Byrne, W. J., Euler, A. R., Ashcraft, E., Nash, D. G., Seibert, J. J., & Golloday, E. S.
(1982). Gastroesophageal reflux in the severely retarded who vomit: Criteria for
and results of surgical intervention in twenty-two patients. Surgery, 91, 95-98.
Carrington, E. G. (1978). A seating position for a cerebral-palsied child. American
Journal of Occupational Therapy, 32, 179-181.
Chandra, R. K. (1983). Nutrition, immunity and infection: Present knowledge and fu-
ture directions. Lancet, 1, 688-691.
Christarella, M. C. (1975). Comparison of straddling and sitting apparatus for the spas-
tic cerebral-palsied child. American Journal of Occupational Therapy, 29,
273-276.
Christie, D. L., O’Grady, L. R., & Mack, D. V. (1978). Incompetent lower esophageal
sphincter and gastroesophageal reflux in recurrent acute pulmonary disease of in-
fancy and childhood. Journal of Pediatrics, 93, 23-27.
Cravioto, J., DeLicardie, E. R., & Birch, H. G. (1966). Nutrition, growth, and
neurointegrative development: An experimental and ecological study. Pediatrics,
38, 319-372.
Croft, R. D. (1992). What consistency of food is best for children with cerebral palsy
who cannot chew? Archives of Disease in Childhood, 67, 269-271.
Dahl, M., Thommessen, M., Rasmussen, M., & Selberg, T. (1996). Feeding and nutri-
tional characteristics in children with moderate or severe cerebral palsy. Acta
Paediatrica, 85(6), 697-701.
Darling, D. B., McCauley, R. G. K., Leonidas, J. C., & Schwartz, A. M. (1978).
Gastroesophageal reflux in infants and children: Correlation of radiological sever-
ity and pulmonary pathology. Radiology, 127, 735-740.
Darwish, H. (1999). Living with cerebral palsy and tube feeding: Easier to feed but at
what cost? Journal of Pediatrics, 135, 272-273.
Dobbing, J. (1990). Early nutrition and later achievement. Proceedings of the Nutrition
Society, 49, 103-118.
Edebol-Tysk, K. (1989). Evaluation of care-load for individuals with spastic
tetraplegia. Developmental Medicine and Child Neurology, 31(6), 737-745.
Euler, A. R., & Byrne, W. J. (1983). Gastric emptying times of water in infants and
children: Comparison of those with and without gastroesophageal reflux. Journal of
Pediatric Gastroenterology and Nutrition, 2, 595-598.
Euler, A. R., Byrne, W. J., Ament, M. E., Fonkalsrud, E. W., Strobel, C. T., Siegel, S.
C., Katz, R. M., & Rachelefsky, G. S. (1979). Recurrent pulmonary disease in chil-
dren: A complication of gastroesophageal reflux. Pediatrics, 63, 47-51.
Gisel et al. 41
Evans, P. M., Evans, S. J. W., & Alberman, E. (1990). Cerebral palsy: Why we must
plan for survival. Archives of Disease in Childhood, 65, 1329-1333.
Ferry, G. D., Selby, M., & Pietro, T. J. (1983). Clinical response to short-term
nasogastric feeding in infants with gastroesophageal reflux and growth failure.
Journal of Pediatric Gastroenterology and Nutrition, 2, 57-61.

Galler, J. R., Ramsey, F., & Solimano, G. (1984). The influence of early malnutrition
on subsequent behavioural development III. Learning disabilities as a sequel to
malnutrition. Pediatric Research, 18, 309-313.
Gaultier, C., Fletcher, M. E., Beardsmore, C., England, S., & Motoyama, E. (1995).
Respiratory function measurements in infants: Measurement conditions. American
Journal of Respiratory Critical Care Medicine, 151, 2058-2064.
Gisel, E., Applegate-Ferrante, T., Benson, J., & Bosma, J. (1995). Effect of sensorimotor
treatment on measures of growth, eating efficiency and aspiration in the dysphagic
child with cerebral palsy. Developmental Medicine and Child Neurology, 37,
528-543.
Gisel, E. G. (1988). Chewing cycles in 2- to 8-year-old normal children: A develop-
mental profile. American Journal of Occupational Therapy, 42(1), 40-46.

Gisel, E. G. (1994). Oral-motor skills following sensorimotor intervention in the mod-
erately eating-impaired child with cerebral palsy. Dysphagia, 9(3), 180-192.
Gisel, E. G., & Alphonce, E. (1995). Classification of eating impairments based on eat-
ing efficiency in children with cerebral palsy. Dysphagia, 10(4), 268-274.
Gisel, E. G., Applegate-Ferrante, T., Benson, J. E., & Bosma, J. F. (1996). Oral-motor
skills following sensorimotor therapy in two groups of moderately dysphagic chil-
dren with cerebral palsy: Aspiration vs non-aspiration. Dysphagia, 11(1), 59-71.
Gisel, E. G., Birnbaum, R., & Schwartz, S. (1998). Helping the feeding impaired child.
In T. J. David (Ed.), Recent Advances in Paediatrics (Vol. 16, pp. 59-71). London:
Churchill Livingstone.
Gisel, E. G., & Patrick, J. (1988). Identification of children with cerebral palsy unable
to maintain a normal nutritional state. Lancet, 1, 283-286.
Griggs, C. A., Jones, P. M., & Lee, R. E. (1989). Videofluoroscopic investigation of
feeding disorders of children with multiple handicap. Developmental Medicine and
Child Neurology, 31(3), 303-308.
Guthrie, H. A., & Crocetti, A. F. (1985). Variability of nutrient intake over a 3 day pe-
riod. Journal of the American Dietetic Association, 85, 325-327.
Heine, R. G., Reddihough, D. S., & Catto-Smith, A. G. (1995). Gastro-esophageal re-
flux and feeding problems after gastrostomy in children with severe neurological
impairment. Developmental Medicine and Child Neurology, 37(4), 320-329.
Hoyoux, C., Forget, P., Lambrechts, L., & Geubelle, F. (1985). Chronic broncho-
pulmonary disease and gastroesophageal reflux in children. Pediatric Pulmonology,
1, 149-153.
Ivaneinen, M., & Alvarez, N. (2000). Drug treatment of epilepsy in people with intel-
lectual disability. Journal of Intellectual Disability Research, 42(Supplement 1), iv.
Jones, P. M. (1989). Feeding disorders in children with multiple handicaps. Develop-
mental Medicine and Child Neurology, 31, 398-406.
Kenny, D. J., Koheil, R. M., Greenberg, J., Reid, D., Milner, M., Moran, R., & Judd, P.
L. (1989). Development of a multidisciplinary feeding profile for children who are
dependent feeders. Dysphagia, 4(1), 16-28.
Krick, J., Murphy, P. E., Markham, J. F. B., & Shapiro, B. K. (1992). A proposed for-
mula for calculating energy needs of children with cerebral palsy. Developmental
Medicine and Child Neurology, 34, 481-487.
Krick, J., Murphy-Miller, P., Zeger, S., & Wright, E. (1996). Pattern of growth in chil-
dren with cerebral palsy. Journal of the American Dietetic Association, 96,
680-685.
Krick, J., & VanDuyn, M. A. S. (1984). The relationship between oral-motor involve-
ment and growth: A pilot study in a pediatric population with cerebral palsy. Jour-
nal of the American Dietetic Association, 84(5), 555-559.
Larnert, G., & Ekberg, O. (1995). Positioning improves the oral and pharyngeal swal-
lowing function in children with cerebral palsy. Acta Paediatrica, 84, 689-692.
Magnusson, B. (1964). Oral conditions in a group of children with cerebral palsy. II.
Orthodontic aspects. Odontologisk Revy, 15, 41-53.
McGrath, S. J., Splaingard, M. L., Alba, H. M., Kaufman, B. H., & Glicklick, M.
(1992). Survival and functional outcome of children with severe cerebral palsy fol-
lowing gastrostomy. Archives of Physical Medicine and Rehabilitation, 73,
133-137.
Mollitt, D. L., Golloday, E. S., & Seibert, J. J. (1985). Symptomatic gastroesophageal
reflux following gastrostomy in neurologically impaired patients. Pediatrics, 75,
1124-1126.
Morton, R. E., Bonas, R., Fourie, B., & Minford, J. (1993). Videofluoroscopy in the as-
sessment of feeding disorders of children with neurological problems. Develop-
mental Medicine and Child Neurology, 35(5), 388-395.
Myhr, U., & von Wendt, L. (1991). Improvement of functional sitting position for chil-
dren with cerebral palsy. Developmental Medicine and Child Neurology, 33(3),
246-256.
Myhr, U., von Wendt, L., Norrlin, S., & Radell, U. (1995). Five-year follow-up of
functional sitting position in children with cerebral palsy. Developmental Medicine
and Child Neurology, 37(7), 587-596.
Nwaobi, O. M., Brubaker, C. E., Cusick, B., & Sussman, M. D. (1983). Electro-
myographic investigations of extensor activity in cerebral-palsied children in dif-
ferent seating positions. Developmental Medicine and Child Neurology, 25,
175-183.
Orenstein, S. R., Magill, H. R., & Brooks, P. (1987). Thickening of infant feedings for
therapy of gastroesophageal reflux. Journal of Pediatrics, 110, 181-186.
Orenstein, S. R., & Orenstein, D. M. (1988). Gastroesophageal reflux and respiratory
disease in children. Journal of Pediatrics, 112, 847-858.
Orenstein, S. R., & Whitington, P. F. (1983). Positioning for prevention of infant
gastroesophageal reflux. Journal of Pediatrics, 103, 534-537.
Ottenbacher, K., Hicks, J., Roark, A., & Swinea, J. (1983). Oral-sensorimotor therapy
in the developmentally disabled: A multiple baseline study. American Journal of
Occupational Therapy, 37, 541-547.
Gisel et al. 43
Patrick, J., Boland, M., Stoski, D., & Murray, G. E. (1986). Rapid correction of wasting
in children with cerebral palsy. Developmental Medicine and Child Neurology,
28(6), 734-739.
Patrick, J., & Gisel, E. G. (1990). Nutrition for the feeding impaired child. Journal of
Neurological Rehabilitation, 4, 115-119.

Persson, L. A., & Carlgren, S. G. (1984). Measuring children’s diets: Evaluation of di-
etary assessment techniques in infancy and childhood. International Journal of Epi-
demiology, 13, 506-517.
Pope, P. M., Bowes, C. E., & Booth, E. (1994). Postural control in sitting. The SAM
system: Evaluation of use over three years. Developmental Medicine and Child
Neurology, 36(3), 241-252.
Ramenofsky, M. L., & Leape, L. L. (1981). Continuous upper esophageal pH monitor-
ing in infants and children with gastroesophageal reflux, pneumonia and apneic
spells. Journal of Pediatric Surgery, 16, 374-378.
Reid, D. T., & Sochaniwskyj, A. (1991). Effects of anterior-tipped seating on respira-
tory function of normal children and children with cerebral palsy. International
Journal of Rehabilitation Research, 14, 203-212.

Reilly, S., & Skuse, D. (1992). Characteristics and management of feeding problems of
young children with cerebral palsy. Developmental Medicine and Child Neurology,
34(5), 379-388.
Rempel, G. R., Colwell, S. O., & Nelson, R. P. (1988). Growth in children with cere-
bral palsy fed via gastrostomy. Pediatrics, 82, 857-862.
Rogers, B. T., Arvedson, J., Buck, G., Smart, P., & Msall, M. (1994). Characteristics of
dysphagia in children with cerebral palsy. Dysphagia, 9, 69-73.
Rogers, B. T., Arvedson, J., Msall, M., & Demerath, R. R. (1993). Hypoxemia during
oral feeding of children with severe cerebral palsy. Developmental Medicine and
Child Neurology, 35, 3-10.
Sanders, K. D., Cox, K., Cannon, R., Blanchard, D., Pitcher, J., Papatakis, P., Varella,
L., & Maughan, R. (1990). Growth response to enteral feeding by children with ce-
rebral palsy. Journal of Parenteral and Enteral Nutrition, 14(1), 23-26.
Shapiro, B. K., Green, P., Krick, J., Allen, D., & Capute, A. J. (1986). Growth of se-
verely impaired children: Neurological versus nutritional factors. Developmental
Medicine and Child Neurology, 28(6), 729-733.
Shepherd, R., Wren, J., Evans, S., Lander, M., & Ong, T. H. (1987). Gastroesophageal
reflux in children. Clinical Pediatrics, 26, 55-60.
Sondheimer, J. M., & Morris, B. A. (1979). Gastro-esophageal reflux among severely
retarded children. Journal of Pediatrics, 94(5), 710-714.
Staiano, A., Simeone, D., Giudice, E. D., Miele, E., Tozzi, A., & Toraldo, C. (2000).
Effect of the dietary fibre glucomannan on chronic constipation in neurologically
impaired children. Journal of Pediatrics, 136, 41-45.
Stallings, V. A., Charney, E. B., Davies, J. C., & Cronk, C. E. (1993). Nutritional status
and growth of children with diplegic or hemiplegic cerebral palsy. Developmental
Medicine and Child Neurology, 35(11), 997-1006.
Strauss, D., Kastner, T., Ashwal, M. D., & White, M. S. (1997). Tube feeding and mor-
tality in children with severe disabilities and mental retardation. Pediatrics, 99,
358-363.
Strauss, D., & Shavelle, R. (1998). Life expectancy of adults with cerebral palsy. De-
velopmental Medicine and Child Neurology, 40, 369-375.
Sullivan, P. B. (1997). Gastrointestinal problems in the neurologically impaired child.
Baillere’s Clinical Gastroenterology, 11, 529-546.
Troughton, K., & Hill, E. (2001). Relation between objectively measured feeding com-
petence and nutrition in children with cerebral palsy. Developmental Medicine and
Child Neurology, 43, 187-190.
Turnage, R. H., Oldham, K. T., Coran, A. G., & Blane, C. E. (1989). Late results of
fundoplication for gastroesophageal reflux in infants and children. Surgery, 105,
457-464.
Wolfe, M. M., & Sachs, G. (2000). Acid suppression: Optimizing therapy for
gastroduodenal ulcer healing, gastroesophageal reflux disease, and stress-related
erosive syndrome. Gastroenterology, 118(Supplement 1, Q1), 370-375.
World Health Organization. (1985). Energy and protein requirements. Geneva: World
Health Organization.
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Feeding Management of Children With Severe Cerebral Palsy

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Feeding Management of Children with Severe Cerebral Palsy and

Article in Physical & Occupational Therapy in Pediatrics · February 2003

Erika G Gisel Marie-Josée Tessier

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Eric Drouin Gaetan Filion

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Eating deveopment View project

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and Eating Impairment:

ABSTRACT. Some children with cerebral palsy and severe feeding

optimal positioning for feeding, control of gastroesophageal reflux and

tional residual capacity. One child experienced a 37% improvement in

from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail ad-

KEYWORDS. Dysphagia, malnutrition, pulmonary function, gastro-

Children with cerebral palsy (CP) and severe eating impairments

of a variety of food textures, with absence or delayed weaning to table

quences of these multiple problems is caloric under nutrition (Patrick,

tus to more carefully examine the relationship between positioning and

1997). It was the purpose of this exploratory study to recruit children

tionist, occupational therapist) for evaluation, treatment planning and a

cian’s record, hospital record) during the 12 months preceding the

Examinations were performed at study entry, Month 0 (M0), and at

If gastroesophageal reflux was identified, children were treated medi-

Children were only excluded from the study if videofluoroscopy and

ence) were taken in triplicate and averaged. Intake calculations were

received the following intervention for 12 months:

1. using food textures that minimized or eliminated aspiration during

rior-posterior transport and swallowing. Such exercises do not substan-

This 43-month-old girl had 2 medically documented episodes of

broncho-dilators improved total resistance by 15%, whereas the func-

Omeprazole 1.4 mg/kg/day was prescribed and a second esophageal

TABLE 1. Clinical Description of Children with CP and Severe Feeding Impair-

Evaluations Child #1 Child #2 Child #3

M0 reflux no reflux no reflux, but “some

M0 = Month 0, onset of study; M12 = Month 12, end of study

Clinical Course During the One-Year Study Period

tions to control seizures (phenobarbital, valproate, vigabatrin, gabapentin

Evaluation Following the 1-Year Study Period

Pulmonary Function Tests showed a total respiratory resistance of

accommodate her growth and to maintain optimal support for function.

TABLE 2. Anthropometric Measurements of Children with CP and Severe Feed-

Child #1 Child #2 Child #3

Weight (kg) 10.94 12.90 12.04 13.68 7.74 9.60

Length (cm) 91.8 94.5 97.0 98.3 72.0 86.0

Arm Circ. (mm) 130 150 141 135 150 135

TABLE 3. Functional Feeding Skills of Children with CP and Severe Feeding

Child #1 Child #2 Child #3

Clearing 41.7 41.7 41.7 - inadequate inadequate

M0 = Month 0, onset of study; M12 = Month 12, end of study

was controlled with medication. She followed a course of nitrazepam,

Clinical Course During the 1-Year Study Period

Evaluation Following the 1-Year Study Period

Gastroesophageal Reflux Examination did not reveal any symptoms.

This 14-month-old girl had severe spastic tetraplegia with multifocal

Clinical Course During the 1-Year Study Period

Due to pneumonia with hospitalization during month 1 of the study

action, the child was hospitalized with pneumonia in month 12 and

Evaluation Following the 1-Year Study Period

Pulmonary Function Tests showed a total respiratory resistance of

was attempted but the child aspirated.

The pulmonary function of the two children who completed their

respiratory resistance, but had a clinically significant improvement in