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Treatment of Feeding Disorders in Children

with Down Syndrome

RICHARD J. SHAW, MANUEL GARCIA, MARIANNA

THORN, COURTNEY A. FARLEY & GRETCHEN FLANAGAN
Stanford University, USA

A B S T R AC T
This article describes a 6-year-old boy with Down Syndrome who was referred with
a refractory feeding disorder and his successful treatment using a multidisciplinary
treatment team approach. The case highlights the complex nature of feeding
disorders in this population, as well as the need to consider multiple issues during
their assessment and treatment.

K E Y WO R D S
attention deficit/hyperactivity disorder, Down syndrome, feeding disorder

P E D I AT R I CF E E D I N G D I S O R D E R S are surprisingly prevalent with some studies

suggesting rates as high as 25–45% of all children (Linscheid, Budd, & Rasnake, 1995).
They are particularly common in children with prematurity or those surviving with
severe medical complications from infancy. Although pediatric psychologists and psychi-
atrists are increasingly involved in requests for the assessment and treatment of these
conditions, there is very little data on the efficacy of treatment intervention programs.
Feeding disorders are also commonly found in children with Down syndrome (DS)
and may have important long-term health consequences, including growth deficits and
decreased performance on tests of academic and cognitive performance (Drotar, 1995).
Some studies estimate that up to 80% of children with DS have difficulties related to
food or feeding (Calvert, Vivian, & Calvert, 1976; Pipes & Holm, 1980). The attainment
of feeding milestones in DS is also delayed by 10–35% depending on the age of assess-
ment (Cullen, Cronk, Pueschel, Schnell, & Reed, 1981). These feeding difficulties may
be secondary to hypotonia, weak sucking or rooting reflexes, or persistence of the tongue
protrusion reflex which may interfere with both breastfeeding, and the progression to
solid food (Patterson & Ekvall, 1993). The development of self-feeding skills is often
delayed and associated with inappropriate parental feeding practices. It is also possible
to develop iatrogenic feeding problems secondary to invasive medical treatments which
may be common in children with DS (Linscheid et al., 1995).
Although there have been several articles that describe feeding practices and eating
patterns in children with DS, there are relatively few reports that describe their

Clinical Child Psychology and Psychiatry 1359–1045 (200301)8:1 Copyright © 2003

SAGE Publications (London, Thousand Oaks and New Delhi) Vol. 8(1): 105–117; 029825
www.sagepublications.com

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CLINICAL CHILD PSYCHOLOGY AND PSYCHIATRY 8(1)

successful treatment (Calvert et al., 1976). In this article we describe a DS patient with
feeding difficulties that demonstrates the multifactorial nature of these complex and
difficult-to-treat disorders. We also describe a multidisciplinary treatment approach that
led to successful resolution of his feeding disorder.

Case report
Martin is a 6-year-old boy diagnosed with DS. He was referred for evaluation of his
aversion to solid food and failure-to-thrive. At the time of admission, Martin was fed
exclusively using a bottle, and would drink only Pediasure®. Martin would occasionally
eat ice cream and pickles, or lick potato chips, but otherwise ate no solid food. His mother
also reported that he would vomit several times/day, particularly when nervous or agitated.
Although Martin’s weight did not place him at immediate medical risk, his refusal to eat
or drink in public meant that he was not able to attend school.

Past medical history

Martin was diagnosed with DS by alpha-feto protein testing at 17 weeks gestation. He was
born by emergency Cesarian section, following decreased fetal movements, and trans-
ferred to a neonatal intensive care unit for the first three weeks of life. He was also diag-
nosed with a small secundum atrial septal defect. He had recurrent chronic sinusitis that
was complicated by persistent oral thrush related to chronic antibiotic treatment. His
gastroenterology work-up, including barium swallow, was within normal limits.

R I C H A R D S H AW , M B , B S , is Medical Director of the Pediatric Psychiatry Consultation-

Liaison Service at Lucile Packard Children’s Hospital at Stanford, and Assistant Professor of
Psychiatry and Pediatrics at Stanford University School of Medicine. His research interests
include the study of the psychological issues in children with chronic physical illness.
C O N TA C T :
Richard Shaw, MB, BS, Department of Psychiatry and Behavioral Sciences,
Stanford University School of Medicine, 410 Quarry Road, Palo Alto, CA 94305–5719, USA.

MANUEL GARCIA, MD, is Assistant Professor of Pediatric Gastroenterology, Hepatology

and Nutrition in the Department of Pediatrics at Lucile Salter Packard Children’s Hospital
at Stanford and Stanford University School of Medicine. His main areas of research include
failure to thrive, and disorders of malabsorption.

M A R I A N N A T H O R N , O T R , is a Clinical Specialist in neonatal and childhood feeding

problems and Supervisor of the Occupational Therapy department at Lucille Packard
Children’s Hospital at Stanford.

C O U R T N E Y A . FA R L E Y , M S , C C C , is a Senior Pediatric Speech-Language Pathologist at

Mid Peninsula Speech and Language Clinic which provides services to Lucile Packard
Children’s Hospital at Stanford. In addition to this team, she participates in a multidisci-
plinary team for Mary L. Johnson Infant Development Clinic at Stanford. She is also involved
in studies that follow the development of premature infants up to age seven. Her other areas
of interest include apraxia of speech and stuttering in children and adolescents.

G R E T C H E N D. F L A N AG A N , R D
is a Registered Dietician specializing in pediatrics who
works in the Department of Clinical Nutrition at Lucile Packard and as part of the multi-
disciplinary team for treating pediatric feeding disorders.

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Feeding history
Martin had trouble feeding during the first two weeks of life, and a nasogastric tube was
placed. He was fed with expressed breast milk given in a bottle for the first two months of
life. He was then hospitalized for two weeks for a respiratory infection and resumed
normal bottle-feeding after discharge. Baby foods were introduced without difficulty
around five months of age. At six months of age, Martin was rehospitalized for a lung infec-
tion complicated by severe vomiting and diarrhea and he regressed to bottle-feeding. He
refused to resume solid feeding and was fed exclusively with a bottle from this date
onwards. Martin was seen for a feeding evaluation at age two years. His mother reported
that the clinician attempted to force Martin to take food by mouth, resulting in him
choking and becoming cyanotic. A second attempt at treatment resulted in dehydration,
followed by a three-week hospitalization. During this period, Martin again acquired a
secondary lung infection, and was subjected to multiple blood tests and medical
procedures, which his mother believed were quite traumatic. After this date, Martin’s
mother gave up on all further attempts to wean him from the bottle.

Social history
Martin had three elder siblings, all healthy and without history of feeding difficulties. He
lived with his parents, and 18-year-old brother. His mother was hearing impaired. He had
attended school but had been placed on home school because of the school’s concerns
about dehydration. He was doing poorly academically, and had been asked to repeat
kindergarten. His mother reported that he got on well with other children, but functioned
socially at the level of a 2–3-year-old.

Formulation
Martin was assessed as having an aversion to solid food with no underlying medical basis.
He was able to chew and swallow solid food, but was heavily dependent on bottle-feeding
as his primary source of nutrition. It was hypothesized that traumatic experiences associ-
ated with attempts to introduce solid food had contributed to his feeding aversion. Over
the years, Martin appeared to have developed negative behavioral responses to oral
feeding efforts that had left his family reliant on Pediasure® to meet his nutritional needs.
His mother’s anxiety about his weight and her perception of his medical fragility resulted
in her being nervous about trying alternate foods or feeding strategies. Other relevant
issues included oral-motor difficulties, reduced appetite and interest in food, and
communication difficulties. Finally, his need for the presence of his mother for bottle-
feeding suggested the possibility of separation–anxiety issues.

Treatment course
Martin was admitted to an inpatient medical–psychiatry unit that is based in a general
pediatric hospital and which has been described in more detail by Lock and Steiner (1999).
The unit specializes in the management of children and adolescents with mixed medical
and psychiatric disorders, including patients with feeding disorders. The unit differs from
other general pediatric units in that the nursing staff have additional training in pediatric
psychiatry issues and there is close daily consultation with other disciplines including occu-
pational therapy and nutrition. Martin’s treatment involved the collaboration of several
disciplines, as outlined below, and comprised three weeks of inpatient treatment followed
by three weeks of day treatment.

Gastroenterology
Gastroenterology work-up including esophagogastroduodenoscopy, esophageal transit
study and gastric emptying study confirmed that there were no inflammatory, gross
anatomical or dysmotility disorders to explain Martin’s feeding difficulties. He was started

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on Periactin 2 mg p.o. b.i.d. in an attempt to stimulate his appetite but there were no
additional medical interventions.

Nutrition
Martin presented in a well-nourished state. His weight of 19.2 kg placed his weight above
the 75th percentile for age on a DS growth chart. Martin’s calorie needs were estimated
to be 70–90 calories/kg body weight. His nutritional needs were being met with 7 cans of
Pediasure® consumed by bottle throughout the day and night. The goal of treatment was
to introduce a variety of solid foods. Initially, Martin was allowed to continue his bottle-
feedings of Pediasure® during the daytime, however, in his night-time feedings, water was
progressively substituted for the Pediasure® in an attempt to stimulate his daytime
appetite. Gradually, over a three-week period, the daytime bottle-feedings were also
omitted – although not until he was comfortably drinking from a cup with a straw – first
by reducing the volume of Pediasure® in each bottle, and then the frequency. Close moni-
toring of his vital signs prevented Martin from becoming dehydrated, and was one of the
justifications for initiating his treatment as an inpatient. Martin’s caloric intake was moni-
tored daily. Initially, his caloric intake dropped to an average of 40 calories/kg of body
weight. However, by the end of the hospitalization his average caloric intake was 77
calories/kg of body weight meeting his estimated nutritional needs.

Psychiatry
Psychiatric assessment suggested that Martin met criteria for attention deficit/hyperactiv-
ity disorder (ADHD), based on history, direct observation and Conner Scale ratings
(Conners & Kronsberg, 1985). Martin’s level of hyperactivity was such that it directly inter-
fered with his ability to sustain adequate attention during meals. His ADHD symptoms
diminished following treatment with dextroamphetamine (5 mg p.o. Qam; 2.5 mg p.o.
Q2:00 pm). Although psychostimulants are commonly associated with appetite suppres-
sion, the benefits of his improved attention span in facilitating his treatment participation
outweighed any possible negative gastrointestinal side effects. The recognition and treat-
ment of his ADHD was an important breakthrough in allowing Martin to take better
advantage of other treatment interventions.
Several additional relevant behavioral and psychological factors were identified. First
was that Martin’s previous history of being ‘medically fragile’ created a fear in his mother
about the potential consequences of weight loss. This fear allowed Martin to manipulate
and intimidate his mother who also lacked strategies or the confidence to make changes
to the problematic feeding routine. She was also skeptical about the treatment plan. For
example, she questioned his diagnosis of ADHD, and believed that he was just ‘energetic’.
In individual meetings with the therapist, she expressed difficulties believing that Martin
would ever attain sufficient independence to leave home. It was hypothesized that his
mother’s fearfulness about the potential risks of dehydration resulted in her being unwill-
ing to try new initiatives that entailed reducing his bottle-feeding.
Key to making progress with Martin was intensive family therapy with his mother. The
initial focus of the work was primarily educational and supportive, for example, helping
her accept the potential value of a trial of stimulants for his attention deficits as well as
helping her set limits around his requests for bottle-feeding during the phase of eliminat-
ing his night-time bottle. Education focused on efforts to decrease his mother’s fear around
the consequences of temporary weight loss which is always anticipated when embarking
on treatment of this nature. It was explained that efforts to change the feeding routine
would inevitably lead to protest and food refusal on the part of Martin, but that there was
a safe margin in which to allow weight loss during his inpatient admission. Weekly
meetings were critical to helping her develop trust in the treatment team.

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Occupational therapy (OT)

Martin was assessed as having moderate to severe oral-sensory aversion that limited his
transition to food with increased texture or new flavors. Treatment during his OT sessions,
consisting of breakfast and lunch, focused on several strategies. All meals took place in a
high chair with a seat belt and tray to facilitate better attention and control during the
feeding sessions. Martin was first seen without his mother present and in a room with little
stimulation. The rationale for excluding his mother during the initial phase was to estab-
lish whether Martin could be encouraged to eat with the occupational therapist in a
controlled environment. Parents are routinely introduced to the feeding sessions after
some initial progress has been made. The goal was to use a program of behavior modifi-
cation in which Martin was rewarded for trying new foods or activities involving feeding,
and discouraged from the negative feeding behaviors. However, Martin’s responses were
inconsistent, and his attention span so brief that minimal gains were made until the
decision to try stimulant medication.
After treatment of his ADHD, Martin’s was better able to attend to goal-oriented play
activities used to reward desired oral-motor behaviors. Videos, puzzles, building with
blocks, and reading of stories were all used as incentives for eating desired amounts of
food within a designated 30-minute period. Time outs were used to reduce negative behav-
iors. Martin’s sociability and desire for attention helped make the use of contingent social
attention an effective treatment intervention.
Techniques to improve Martin’s oral-motor skills included blowing and sucking exer-
cises to facilitate lip closure and strengthening of his cheek muscles so that he could take
in fluids using a straw. After introducing cup drinking, it was possible to make the tran-
sition from milk and Pediasure® to food of greater texture, including yogurt, ice cream
and Carnation Instant Breakfast®. Later, chicken broth and soup were added, followed
by the transition to eating with a spoon. Slowly, the texture of foods accepted by spoon
was increased, as was the variety of food.
After two weeks in the program, Martin’s mother was introduced to the sessions, first
as an observer to watch the therapist model the new feeding techniques. Finally, his mother
started to participate in the meals, taking turns with the therapist, and then feeding Martin
under the supervision of the occupational therapist before the transition towards discharge
home.

Speech and language (S&L)

Evaluation of Martin’s expressive and receptive language, using the Preschool Language
Scale–3 (Zimmerman, Steiner, & Pond, 1992), indicated skills of 2 years, 9 months and 2
years, 2 months respectively, significantly below those expected for his age level. Evaluation
of his oral-motor and speech production skills revealed reduced tone, strength and coordi-
nation of his articulators (tongue, lips, jaw) which was reflected in his articulation as well
as feeding difficulties. He showed difficulty coordinating the fine motor movements neces-
sary for connected speech and as a result, many of his care providers had difficulty under-
standing him. This led to increased frustration for both Martin and the treatment team.
Martin participated in daily S&L sessions during his treatment. At the start of therapy,
he demonstrated an increased activity level, motor impulsivity and reduced attention
focus. This resulted in difficulties remaining seated during therapy sessions and complet-
ing tasks. Behavior management principles, including a structured routine and both verbal
and tangible reinforcement, as well as the use of medication for his ADHD, assisted in
improving Martin’s attention and ability to learn.
His communication difficulties were addressed using a total communication approach
that addressed both oral-motor/speech production and expressive language/communi-
cation. The former involved the use of oral-motor exercises, massage and stretches (lips,
cheeks, gums), as taken from the Debra Beckman Oral Motor Program (Beckman, 1990),

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to stimulate sensory information and increase his awareness of articulatory movements. A

combination of cueing methods was also implemented to assist Martin in using his articu-
lators to better mark speech sounds and sound combinations. For example, visual support
(mirror), tactile cues (touch lips for the bilabial sounds /m, b, p/) and verbal prompting
(‘use your lips’), were used in therapy. To increase his expressive language and improve
his communicative effectiveness, while easing frustration, gestures were introduced in
therapy. This involved the use of specific gestures along with the verbal model, versus sign
language, which involves its own rule system. Martin’s approximations of specific gestures
were gross, as were many of his speech productions, secondary to fine motor difficulties.
Nonetheless, the combination of gestures and verbalizations resulted in improved intelli-
gibility. For example, incorporating the gestures for ‘more,’ ‘want’ and ‘eat’ enabled Martin
to communicate more effectively during the OT feeding sessions. The use of gestures,
along with choice-making and reinforcement, helped ease the frustration for both Martin
and his care providers and improve their interactions.

Outcome
By the time of discharge, Martin was eating large bowls of thick soup-based mixtures,
with fork-mashed vegetables, meats, noodles, and yogurt with fruit pieces. His lingual
range of movements had improved greatly although he was still limited to munching and
mashing soft foods. He accepted a wider variety of tastes and textures including dry
textured foods. He was able to complete his meals within a 30-minute interval, without
the use of videotapes or other distractions. Martin’s admission weight was 19.2 kg, and
his discharge weight 18.5 kg which had been anticipated given the discontinuation of his
high calorie supplement.
Martin returned home with his mother to a rural area without access to services from OT
or S&L. Telephone contact was maintained to monitor his progress. At six months follow-
up, his weight had increased in line with expectations based on his growth charts indicating
that he was able to maintain a safe body weight while making the transition from
Pediasure® to a solid food diet. He continued to eat a wide variety of foods, although still
required food to be fork mashed to facilitate eating. He was able to feed himself indepen-
dently at school, although at home, his mother still tended to play an active role in feeding.

Discussion
Feeding problems may be classified based on their etiology as being related to medical
conditions, oral-motor dysfunction or delay, or behavioral mismanagement (Linscheid
et al., 1995). Pipes and Holm (1980) report that retention of infantile feeding habits and
inappropriate feeding practices on the part of the parents are two of the important
behavioral issues in children with DS. Our case report illustrates the multifactorial
nature of feeding disorders, particularly in a child with DS, speech and language delays
and comorbid ADHD. One major principle behind our approach is our belief that treat-
ment needs to be multidisciplinary in nature and closely coordinated in order to address
each respective issue.
Table 1 outlines the diagnostic and treatment approach used by our treatment team.
Core to our approach is the multidisciplinary team and close collaboration of the disci-
plines of GI, psychiatry, OT, S&L, nursing and nutrition. Also important in the assess-
ment of children who have failed outpatient treatment is the option of inpatient
admission (Linscheid et al., 1995). This allows the team to take temporary control of the
feeding situation and test new feeding approaches while the child is under close medical
observation. This can be particularly helpful when parents have excessive concerns about
the consequences of temporary weight loss.

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Table 1. Feeding disorders in children with Down syndrome: Diagnostic and treatment issues
Diagnostic issues
• Medical issues
• Oral-motor dysfunction
• Sensory defensiveness
• Parental anxiety
• Reinforcement of negative feeding patterns
• Communication difficulties
• Comorbid psychiatric illness
Behavioral treatments
• Contingent social attention
• Behavioral modification interventions
• Appetite manipulation
• Family therapy
Occupational therapy
• Structure and time limits on meals
• Use of incentives, distraction and behavior modification techniques during meals
• Exercises to improve oral-motor skills
• Gradual introduction of foods with increased textures
• Education of parent about feeding techniques
Speech and language
• Exercises to improve oral-motor skills and speech intelligibility
• Teaching of gestures and verbalizations to improve expressive language
• Cueing methods to encourage verbal expression

Assessment
Assessment of our patients includes a detailed clinical interview with the parent to cover
the feeding history, nature of the feeding difficulties, current mealtime practices and
routine, and previous efforts used to encourage eating. This interview is supplemented
with direct observation of a typical meal, either a videotape of a home meal, or in the
hospital. During the direct observation, data is gathered on the child’s behavioral
reaction to feeding, as well as the nature of the interaction between the parent and child.
Finally, we review the history and current nutritional aspects of the child’s diet and its
relationship with the child’s growth and weight. Careful nutritional assessment of the
caloric needs of the child is essential before starting treatment (Cloud, 1993).

Medical issues It is important to first clarify with parents that linear growth is reduced
in children with DS so that they have appropriate expectations. There are revised growth
charts available specifically for use in children with DS (Cronk et al., 1988). Dental
problems, including malocclusions and malalignment of teeth may also interfere with
nutrition (Patterson & Ekvall, 1993). It is also common for patients to have complicat-
ing medical issues, either gastrointestinal related, or those affecting cardiovascular and
pulmonary systems. Table 2 shows some of the common medical conditions that may
interfere with feeding.

Post-traumatic feeding disordersAlthough medical disorders may not necessarily have a

direct relationship with the feeding disorder, it is possible that medical treatment and
interventions may indirectly affect feeding. Intubation or the placement of nasogastric
tubes may be experienced as traumatic and result in the development of what Benoit,
Green, and Arts-Rodas (1997) have described as post-traumatic feeding disorders.

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Table 2. Common medical conditions that may result in feeding difficulties

Inflammatory conditions
• Esophagitis/gastroesophageal reflux
• Gastritis
• Duodenitis
• Chronic infections (bacterial, viral, fungal, parasitic)
• Inflammatory bowel disease
• Allergic enteropathies
Anatomical abnormalities
• Orofacial anomalies
• Esophagal stenosis, webs or rings
• Gastric outlet obstruction
• Tracheoesophageal fistula
• Intestinal malrotation
Systemic disorders
• Endocrine
• Metabolic
• Renal tubular acidosis
• Congenital heart disease
• Chronic pulmonary disease
• Neuromuscular
• Cystic fibrosis
• Celiac enteropathy
Disorders of intestinal motility
• Achalasia
• Gastroesophageal reflux
• Neuropathic and/or myopathic intrinsic disorders of the gastrointestinal tract
• Chronic constipation
Minerals
• Zinc deficiency

Conditioned anxiety at the sight of food may provoke a number of avoidance behaviors
that include crying, gagging, or choking at the site of food, refusal to chew or swallow,
or lack of awareness of hunger. These conditioned responses may persist long after the
initial traumatic event has ended, and perpetuate a pattern of selective food refusal or
feeding difficulties, particularly if the avoidance behaviors result in the withdrawal of
food or demand to eat (Linscheid et al., 1995). These issues played a central role in the
origin of our patient’s feeding aversion.

Oral-motor dysfunction Our patient also demonstrated significant difficulties with oral-
motor function that interfered with the transition to solid food. These difficulties
included problems with chewing and manipulating food placed in the mouth, and conse-
quent difficulties swallowing partially chewed food despite a normal swallowing study.
Chewing difficulties are commonly reported in children with DS. This may be a result of
reductions in the size of the oral cavity relative to the tongue due to underdevelopment
of the maxilla and nasal bones, reduced tone of the facial musculature, and inefficiency
of the tongue in lateralizing food for chewing and swallowing (Gisel, Lange, & Niman,
1984; Shapiro, Gorlin, Redman, & Bruhl, 1967; Spizer, Rabinowitch, & Wyhor, 1961).
In addition, children with DS often have prolonged chewing times and take longer to
complete meals (Calvert et al., 1976). Delays in fine motor skills may also result in
difficulties with self-feeding skills (Cullen et al., 1981).

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Sensory defensiveness Sensory defensiveness, defined as the strong adverse reaction to

sensory input, including touch, sound and light, may be an important factor in feeding
disorders, and played a role in our patient’s feeding difficulties (Cloud, 1993). The most
common type of defensiveness involves withdrawal in response to being touched around
the mouth or lips, but also includes reactions to noisy or disruptive feeding environments.
Sensory defensiveness may interfere with the child’s ability to tolerate new textures of
food, and thus prevent development of the feeding process.

Parental anxiety In children with prior serious medical or feeding difficulties, it is

common for parents to develop a pattern of anxiety and hypervigilance related to feeding
issues (Bentovim, 1970). Medical emphasis on the importance of maintaining adequate
nutrition may result in parents becoming focused on calorie intake to the detriment of
establishing normal feeding behaviors. During treatment, this may be particularly prob-
lematic in instances in which the parent is hesitant to implement a new treatment inter-
vention because of fears about weight loss, even when there is no serious medical risk.
Parents who see their child as being at nutritional risk are very likely to become over-
active in the feeding process, and this increased activity has been shown to be associated
with decreased food intake and growth (Crow, Fawcett, & Wright, 1980). In addition,
children with DS are often infantilized by their parents who may fail to recognize that
their child is ready for the next step towards independent feeding (Cloud, 1993; Patter-
son & Ekvall, 1993; Pipes & Holm, 1980) and delay the introduction of solid food
(Hopman et al., 1998). As indicated above, these were critical issues that needed to be
addressed in our patient’s treatment.

Reinforcement of negative feeding patterns Chatoor, Schaefer, Dickson, and Egan (1985)
outlined a developmental approach to conceptualize feeding disorders in younger
children and describe the way struggles around food may represent efforts at separ-
ation–individuation. It is expected that oppositional behaviors, both during feeding and
in other situations, are not only expected, but also provide an important opportunity for
children to mature socially (Linscheid et al., 1995). At around one year of age, the
feeding situation changes from one in which the parent has primary control to one of
shared control between parent and child, and the child’s food refusal may represent their
effort to express their autonomy. This may become an issue in children with medical
problems in which the maintenance of an adequate diet is in conflict with the child’s
developmental desire for greater autonomy. Caregivers may unwittingly reinforce these
struggles by their increased attention to their child during mealtimes, particularly when
there is a component of increased parental anxiety (Linscheid et al., 1995).

Communication difficulties Delays in both expressive and receptive language are common
in DS and also contribute to behavioral difficulties that may be acted out at meal times.
Our patient had significant delays in his S&L and he was not able to communicate his
desires clearly, leading to frustration on the part of both child and parent. Communi-
cation difficulties also interfered with efforts to implement treatment interventions, for
example, in trying to ascertain whether the patient understood the proposed behavior-
modification program.

Comorbid psychiatric disorders Although there have been conflicting findings on the
presence of psychiatric disorders in children with DS, several studies have reported a
higher incidence of behavioral problems, specifically oppositional and externalizing
behaviors, and hyperactivity (Green, Dennis, & Bennets, 1989; Pueschel, Bernier, &

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Pezzulo, 1991). Martin’s treatment illustrates well the importance of a careful psychiatric
assessment, as the presence of a comorbid psychiatric disorder, such as ADHD, may
interfere with the feeding process, as well as limiting the ability to take advantage of
treatment interventions. The treatment of Martin’s ADHD resulted in his increased
ability to focus and participate in and benefit from his OT and S&L sessions.

Behavioral interventions
Linscheid et al. (1995) provided a useful overview of some of the behavioral inter-
ventions used in the treatment of feeding disorders.

Contingent social attention One of the core approaches to encourage feeding is the use
of social attention, in the form of praise and verbal encouragement that is made contin-
gent upon desired feeding behaviors. This is a particularly useful modality in children
with DS, who are often described as social and gregarious, and motivated by the desire
for social approval. Contingent social attention is paired with what has been described
as ‘differential social attention’, or the planned ignoring of the child for food refusal or
tantrums. This technique has been applied in a number of studies of children with feeding
disorders, including children with developmental and cognitive delays (Butterfield &
Parson, 1973).

Behavioral approaches A number of programs describe the use of rewards for desired
feeding behaviors, including those of television time, play with toys, or awarding tokens
or stickers that may be redeemed for prizes (Linscheid et al., 1995). Although children
with DS commonly have reduced intelligence (Patterson & Ekwall, 1993), we have found
that even children with quite delayed cognition are able to grasp the concept of rewards
for appropriate behaviors. Martin responded well to the use of videotapes as a reward
for completing meals. Food refusal, throwing of food, and retention of food in the mouth,
all common in DS (Pipes & Holm, 1980), as well as in our patient, were reduced using
behavioral modification measures. We advocate the use of television time after meals as
a reward, rather than during meals as a distraction. Many parents of children with short
attention spans are fed in front of a television which may actually interfere with the
child’s ability to concentrate on the feeding process (Cloud, 1993).

Appetite manipulation It is common for children with feeding disorders to have lower
appetites than do normal children. The use of appetite stimulants, including Periactin,
was found useful in our case to increase appetite. Changing the feeding schedule in
children who have previously had free access to food by only allowing food at mealtimes
can help establish a normal pattern of appetite and satiation (Cloud, 1993). We reduced
the number of calories given in liquid form by either eliminating snacks and substituting
bottle-feeds with water in order that Martin would arrive at meals feeling hungry.

Family therapy Psychiatric issues played a major role in Martin’s feeding disorder. Aside
from the assessment for psychiatric disorders, such as ADHD mentioned above, we have
noted that parents in particular are anxious and often hesitant to try out new approaches.
It is common for parents to equate good parenting with successful feeding with the result
that the pressure to get their child to eat may interfere with their ability to set appro-
priate limits on access to food outside meals (Linsheid et al., 1995). Exploration of the
parents’ resistance to new treatment interventions is critical, as well as providing support
and reinforcement when parents are able to make changes in their parenting and feeding
techniques. Directly addressing the parental fear of the medical consequences of

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temporary weight loss was important with our patient to facilitate his progress (Cloud,
1993). Psychiatric consultation also played an important role in supporting the treatment
team and helping interpret the behavior of Martin and his mother.

Occupational therapy
It is important to keep in mind that Martin had an absence of age-expected hunger and
interest in food. With this in mind, the motivation for change needed to shift from food
to another incentive. Initially, this was accomplished using immediate reinforcement, for
example, being given a turn to place a puzzle piece after taking a bite and later by
allowing an activity such as watching a video after the meal. Distraction such as watching
a video or playing with toys early in the process served to mask negative sensory experi-
ences such as the introduction of texture. It also proved to be the major motivation for
sitting longer for meals in the absence of normal hunger. Eventually, Martin’s feeding
became more spontaneous and it is generally possible to discontinue the program of
incentives.
Parents need constant support and reassurance throughout the process, especially as
setbacks are common. Helping the parents to set goals that are attainable is important.
A goal may be as small as increasing volume input by 5 ml. Positive reinforcement for
small gains is critical not only for the child but also for the parent. In treatments of limited
duration, the transition to chewing often does not take place and longer term outpatient
follow-up should be expected. With support from a therapist in the patient’s community
and access to consultation with the feeding team, progress can continue after discharge.

Speech and language

Language has long been known to regulate behavior and mediate social interaction, as
well as provide the code for learning. For children with difficulties expressing themselves
effectively, in terms of limited language ability and/or reduced speech intelligibility, such
as many with DS, the result is often frustration for both themselves and their care
providers.
In Martin’s treatment, the initial goal was to increase his attention focus, task compli-
ance and participation in therapy. Each session consisted of a similar routine, outlined
by a visual schedule of tasks. Once he became more responsive and available to learn,
specific speech and language goals were addressed. A total communication approach was
used, which addresses the use of language (verbal and nonverbal), comprehension of
spoken language, oral-motor functioning and speech intelligibility. Oral-motor and
speech production tasks, involving oral massage/stretches/exercises and verbal imitation
of sounds and sound combinations, help facilitate increased movement and control of
articulators for improved articulation and feeding skills. Expressive language tasks,
including the use of gestures to expand utterances and supplement verbalizations, also
result in more effective communication in a variety of contexts, including the feeding
situation.

Conclusion
Feeding disorders in patients with DS are often the final outcome following the coales-
cence of a number of contributing issues. These may include mechanical and sensory
issues, effects of prior medical trauma, and comorbid psychiatric illness. Behaviors that
might not ordinarily lead to major feeding difficulties may often be reinforced and
supported by responses of caregivers permeating the entire parent–child relationship.
Our case illustrates the complexity and multifactorial nature of feeding disorders in

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CLINICAL CHILD PSYCHOLOGY AND PSYCHIATRY 8(1)

children with developmental delays. Successful treatment requires a multidisciplinary

approach and will involve interventions that target each part of the feeding process. It is
also necessary to modify the treatment as the child starts to make therapeutic changes
in much the same way as parents adapt to developments in the feeding of normal
children. This case raises several issues and points to the need for larger controlled trials
to validate specific treatment interventions and to establish treatment guidelines based
on individual patient profiles.

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