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BEST PRACTICE

Feeding difficulties in children with


cerebral palsy
Morag J Andrew,1 Jeremy R Parr,2 Peter B Sullivan1

1
Department of Paediatrics, John ABSTRACT time greater than 3 h per day (28%), con-
Radcliffe Hospital, University of Feeding difficulties are common in children with stipation (26%) and frequent vomiting
Oxford, Oxford, UK
2
cerebral palsy and have an effect on growth, (22%).3 Inadequate nutrition caused by
Institute of Neurosciences,
Newcastle University, Newcastle nutritional state, general health, social interaction feeding difficulties may be further exacer-
Upon Tyne, UK and behaviour and developmental outcomes. bated by excessive losses caused by vomit-
Many factors have an effect on feeding ability.
Correspondence to ing and GOR. The study also highlighted
Morag J Andrew, Department of Identification of these factors and amelioration of
their impact on feeding difficulties is essential to
inadequacies in appropriate professional
Paediatrics, University of Oxford,
John Radcliffe Hospital, Level 2, promote adequate growth and nutrition. Appropriate involvement to this group of children;
Children’s Hospital, OX3 9DU, assessment and management is best achieved by a two-thirds of children had never had a
UK; multiprofessional team skilled in the care of children feeding or a nutritional assessment, and
morag.andrew@paediatrics. only 17% had received input from a dieti-
with cerebral palsy and feeding impairments.
ox.ac.uk
Feeding difficulties must be considered within the cian in the preceding 12 months.
Received 23 August 2011 wider context of family and social circumstance.
Accepted 12 December 2011 Aetiology
Feeding difficulties in children with CP
Introduction result from damage and disruption to the
Feeding difficulties are common among central nervous system (CNS) and enteric
children with cerebral palsy (CP). nervous system (ENS).
Problems with feeding may result from CNS control of feeding and swallow-
oromotor impairment, dysphagia, sen- ing is mediated via pathways involving
sory impairment with or without behav- cranial nerve nuclei, the brainstem and
ioural difficulties, and be associated with cortex. Sensory (afferent) input from cra-
specific medical problems such as aspira- nial nerves V, VII, IX and X is relayed
tion, chest infections, gastro-oesophageal to the nucleus tractus solitarius (NTS)
reflux (GOR) and constipation. Feeding and then to specific regions of the brain-
difficulties may cause inadequate fluid stem known as central pattern generators
intake resulting in dehydration, subopti- (CPGs). Motor (efferent) signals from the
mal calorie intake and inadequate growth. CPG travel via the nucleus ambiguous and
Feeding problems may also have signifi- cranial nerve nuclei V, VII, IX, X and XII,
cant psychosocial impact, quality of life and upper cervical nerves (C1–C3), con-
(QoL) and participation implications for trolling the movements of mastication,
the child, carer and wider family. Early respiration and swallowing necessary to
involvement of a skilled multiprofessional safe, effective feeding. Descending corti-
team is essential to reduce the impact of cal pathways mediate the output from the
feeding difficulties, and improve a range NTS and CPG.4
of outcomes, including nutritional intake The ENS comprises around 1 billion
and growth.1 neurons and functions partly independ-
ently of the CNS. The ENS controls
Prevalence of feeding difficulties in children important functions such as motility,
with CP secretion and gastrointestinal blood flow.
Feeding difficulties occur in 30–40% of The CNS modulates the ENS. In children
children with CP,2 3 and are the common- with neurological disorders, this interac-
est among children with severe motor tion is disordered5 resulting in enteric
impairment.2 In 2000, the Oxford Feeding dysfunction. This manifests primarily as
Study evaluated 271 children with CP foregut dysfunction. The foregut begins
and feeding problems. Common feeding at the mouth and ends in the second part
problems were need for help with feeding of the duodenum. The foregut is densely
(89%), choking with food (56%), feeding innervated by neurons of the ENS, making

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BEST PRACTICE

Figure 1 Causal relationships between factors contributing to feeding difficulties and growth and general health in children with cerebral
palsy.

it vulnerable to abnormal efferent control, leading to easy to perform; TST below the 10th percentile is a
electromechanical dissociation and associated dysmo- strong indicator of low body fat stores and therefore
tility and symptoms. of undernutrition in children with CP.8
These underlying problems may be further compli-
cated by many other factors, some of which interact,
Neurodevelopmental outcome
and are shown in figure 1.
It is possible that nutritional deficits may exacerbate
Consequences of impaired feeding the effects of primary brain injury in very young chil-
Inadequate growth and nutrition dren with CP. Head circumference trajectory reflects
Historically, poor nutritional status was believed to be brain growth. The positive relationship between head
unavoidable in children with severe neurodisability. We circumference and developmental outcome is widely
now understand that chronic feeding problems may acknowledged.9 Brain growth occurs most rapidly dur-
cause malnutrition, dehydration and poor growth. ing the third trimester of pregnancy and the first 2 years
When necessary, these can be avoided through appro- of life, during which explosive neuronal growth and
priate intervention with dietetic input, with or with- synaptogenesis occur. Postnatal rather than intrauter-
out gastrostomy insertion. The contribution of specific ine head growth determines neurodevelopmental out-
brain injury does not adequately explain growth fal- come.10 11 Poor postnatal head growth in ex-preterm
tering in children with neurodisability. Equally, under- infants aged 2 years, but not at term, is strongly associ-
nutrition does not explain all of the growth failure, ated with neurodevelopmental problems10 12 and CP.12
especially linear growth failure, in children with CP.6 One small randomised double-blind control study of
However, the pattern of early growth failure seen in neonates with perinatal brain injury showed improved
children with CP reflects chronic undernutrition; poor head growth and increased corticospinal axon dia-
weight gain is followed by suboptimal linear growth meter in those fed a high-energy and high-protein diet
and eventual drop-off in head growth.7 Body mass (120% of recommended average intake (RAI)) com-
index is a poor measure of body fat in children with pared with those fed a standard energy and protein
CP.8 Skinfold thickness acts as a proxy estimate of diet (100% RAI).13 The developmental outcome of
body fat. Triceps skinfold thickness (TST) is relatively this group of children has not yet been reported. Data

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Table 1 Clinical symptoms and signs of aspiration addition to causing pain and discomfort, constipation
Clinical symptoms and signs of aspiration
may worsen feeding problems by causing recurrent
vomiting, chronic nausea and early satiety.22 As stool
Blinking, eye watering
Throat clearing, grimacing, head tilting
softeners work by increasing the amount of fluid in the
Difficulty handling oral secretions bowel, their effectiveness is often reduced in children
Poor oral motor co-ordination with inadequate liquid intake.
Limited endurance/increasing fatigue during feeding
Delayed swallow reflex Psychosocial impact and QoL
Multiple swallows to clear single bolus
Wet voice quality during or after feeding
Feeding difficulties can have psychosocial impact for
Increased congestion during feeds child and carer. Mealtimes provide potential opportu-
Noisy/wet upper airway sounds associated with feeding nities for social interaction with family and friends. For
Coughing or choking during/after feeds the parents of a child with severe disability, feeding is
Change in breathing rhythm or apnoea
Recurrent wheeze usually an important part of parent-child social inter-
Recurrent respiratory infection action. Dependence on a carer for feeding, prolonged
feeding times, feeding-related behavioural difficulties,
from a small study of children with CP demonstrated messy feeding and limited communication abilities all
improved gross motor skills following 6 months of contribute to reduced opportunities for participation
nutritional rehabilitation.14 Studies of whether or not in feeding in the usual groups and settings (eg, peers at
nutritional supplementation with macronutrients and lunchtimes, and with the family in restaurants).
micronutrients improves neurodevelopmental out- Twenty per cent of parents participating in the
come in children with CP are underway. Oxford Feeding Study3 found mealtimes stressful.
Nutritional support of children with CP and dys- These findings are mirrored by a recent study exam-
phagia is essential during this 2-year formative period. ining feeding-related QoL in children with spastic
However, this is also the period in which the parents quadriplegic CP.23 Parental stress resulting from ade-
of children with neurodisability are experiencing con- quately feeding their child was a prominent nega-
siderable challenges in ensuring their child receives tive feature of focus group responses. Parents also
appropriate calories. reported that time spent preparing food and feeding
their child, plus the preparation required for visits
and trips limited the time available for other activi-
General health
ties for the whole family.23 If oral feeding cannot
The North American Growth in Cerebral Palsy Project2
support adequate growth, some parents may feel a
correlated feeding difficulties with adverse general
sense of failure despite tremendous efforts to nour-
health outcomes. Recurrent aspiration is a recognised
ish their child. This may be compounded by negative
consequence of dysphagia, and may lead to recurrent
interactions with health professionals. The majority
chest infections and chronic lung disease. Aspiration
of parents participating in the study of Morrow et al
may result in recurrent respiratory infections, recur-
reported negative experiences when communicating
rent wheezing, intermittent stridor, atelectasis or
with professionals regarding feeding issues. Parental
desaturation requiring oxygen therapy. Acute aspira-
responses indicated that they thought profession-
tion pneumonia can be life threatening, and children
als did not consider their opinions to be important,
may need expert management in intensive care.
that there was a general lack of information regard-
Children with CP also experience gastrointestinal
ing treatment options and that they were made to
problems caused by disruption of the CNS-ENS axis.
feel guilty or ashamed, particularly with regard to
Foregut dysmotility resulting from transient relaxa-
their child’s nutritional status.23 Parents also felt that
tions of the lower oesophageal sphincter, delayed
healthcare staff took a very clinical approach, placing
gastric emptying and abnormalities of oesophageal
too much emphasis on weight.
peristalsis result in GOR, affecting 15–75% of chil-
Feeding dependence may have an impact on parents
dren with CP.15–17 Severe scoliosis may also contribute
and other family members in other ways. For instance,
to GOR by causing raised intra-abdominal pressure.
particular ways of feeding are often considered essential
GOR commonly manifests as pain caused by resultant
for safe feeding by parents. This may make it difficult
oesophagitis and recurrent vomiting, further compro-
to leave their child in someone else’s care, fearing that
mising the nutritional intake in children with feeding
they are unequipped to deal with mealtime challenges,
difficulty. Chronic constipation occurs in 26–57%
placing severe restrictions on parental and other family
of children with severe disability.18–20 Factors such as
members’ employment and social opportunities.
prolonged immobility, skeletal abnormalities, exten-
sor spasm, hypotonia and altered bowel motility are Assessment of children with neurodisability and feeding
risk factors for constipation. Inadequate fluid and difficulties
fibre intake also contribute. Opioids, anticonvulsants, The increased risk of nutrition and feeding-related
antispasmodics, antihistamines and aluminium antacid morbidity warrants careful assessment and appropri-
preparations can further exacerbate problems.21 In ate intervention in children with CP. The importance

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BEST PRACTICE

Medical and developmental history


Information relating to the aetiology of the child’s
condition, severity of impairment, developmental
progress, co-morbid conditions and drug therapies
should be collected. A clear picture of the child’s level
of receptive language ability and overall cognitive abil-
ity, social communication skills, functional vision and
motor ability is necessary to place the child’s feeding
ability and difficulties in a developmental context.
Communication and cognitive impairments may reduce
the child’s ability to convey hunger, satiety, food pref-
erences or discomfort during feeding. Children with
visual impairment may be unable to anticipate food or
drink approaching. Concurrently evaluating parental
understanding of their child’s ability is essential, as
this helps clinicians understand parents’ expectations
about feeding. This information becomes very useful
at the time of management formulation. A drug his-
tory may reveal that the child is on antiepileptic or
antidrooling medications. These may reduce alertness,
appetite and cause dryness of the mouth. Antiepileptic
medications can be associated with increased risk of
osteopenia. Nevertheless, suboptimal dosing and fre-
quent seizures will interfere with feeding.

Feeding history
A detailed feeding history is essential. Current feeding
should be placed in the context of the previous feed-
ing history, and significant events. Thus, a feeding his-
tory starts with feeding ability and progress following
birth, including any need for nasogastric tube feeding.
The feeding trajectory of infants born preterm must be
considered within the context of their corrected age
appropriate gross and fine motor, cognitive and speech
and language skills. Progress during significant events
(such as hospital admissions due to illness and surgery)
and times of change in feeding (eg, weaning) should
be specifically enquired about. Any history suggestive
of non-developmental, progressive feeding difficulty is
Figure 2 Assessment and management of feeding difficulties in a a cause for concern, and warrants consideration and
child with cerebral palsy. investigation of acquired disorders. Regarding current
feeding, typical nutritional intake should be recorded,
of effective multidisciplinary team (MDT) working with details of quantities and consistencies of food
cannot be overemphasised. The MDT should include, ingested at snacks and mealtimes, and details of spill-
as appropriate, a paediatric gastroenterologist, paedi- age or food vomited. The quantity of fluid ingested
atric surgeon, neurodisability or community paediatri- per day should be calculated in millilitres per kilogram
cian, or paediatric neurologist, paediatric radiologist, body weight per day (50–100 ml/kg/day are adequate
speech and language therapist (SLT), dietician, clinical in temperate climates). Time taken to feed and feeding
nurse specialist, occupational therapist (OT), physio- method are important. Other people involved in feed-
therapist, psychologist and social worker. Open chan- ing the child (eg, carers, nursery or school staff) may
nels of communication with the child’s family doctor, give valuable perspectives on feeding. Involvement
school, health visitor and community nurse facilitate of a dietician in assessing the adequacy of the diet
appropriate exchange of information between all is extremely helpful. It is helpful for feeding to be
professionals around the child. Clinicians in regional observed by the MDT. Twenty-four hour food recall
services value close liaison with the child’s local pro- or a 3-day food diary is often used to provide nutri-
fessionals. Figure 2 provides a summary illustration of tional information. Food diaries are a burden for fami-
the assessment and management of feeding difficulties lies to complete and compliance is variable. Caution in
in a child with CP. interpretation is required as families may overestimate

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BEST PRACTICE

amounts consumed by overlooking spillage or vomit- mixed tone with constant movement at rest. Poor lip
ing. However, food diaries can be used to record food control can cause leakage of food and fluids, resulting
preferences for incorporation into dietary plans. in decreased intake and contributing to poor nutrition
and dehydration. Normal cheek tone allows food to
Growth history be contained within the mouth and supports lip and
The child health record, hospital, community or tongue movement. Poor cheek tone results in collec-
school records should be used to obtain a longitudi- tion of food in the lateral sulci preventing formation
nal record of weight and head circumference. Accurate of a cohesive food bolus.
height measurements are difficult to obtain in children By around 9 months, typically developing children
unable to stand; it may not be possible to obtain previ- have developed horizontal, vertical and lateral tongue
ous accurate height recordings. movements. Children with neurological problems
may never develop lateral tongue movements, com-
Physical examination promising bolus formation, effective chewing and
The purpose of examination is to identify the cause limiting the child’s ability to manage age appropriate
of feeding difficulties and factors which may interfere food textures. SLT assessment of tongue movement
with feeding ability, complications of feeding difficul- is an important component of oromotor skill assess-
ties and evidence of malnutrition. Muscle tone, trun- ment. Tongue thrusting causes food loss and difficul-
cal stability and head control, contractures, spasms ties in bolus formation and control. Tongue thrusting
and abnormal movements all impact on feeding abil- also makes spoon and cup placement difficult. Limited
ity. Evidence of chronic lung disease resulting from tongue movements also cause poor food control, slow
chronic aspiration may exist. Skin condition and or ineffective bolus formation and transit prior to
examination of peripheral circulation provides infor- swallowing and an inability to chew. Children with
mation on nutritional status and helps identify those Worster–Drought syndrome have particular difficulty
at risk of micronutrient deficiencies. Poorly nourished, with oromotor and lip movements (including speech and
poorly hydrated children often have prolonged capil- blowing). Oromotor difficulties are often more severe
lary refill time and cold extremities. than gross motor difficulties in this group of children.24

Gross motor skills Swallowing


Feeding and nutritional problems are more likely to Careful assessment of swallowing is indicated in chil-
occur in children with severe motor disability.3 Muscle dren with significant feeding difficulties. Ideally, clini-
tone, control of movements, degree of independence cians should see the child eat and drink their usual food
and persistence of reflexes which may interfere with and fluid in the usual way in clinic. Safe and effective
feeding ability (eg, asymmetrical tonic neck reflex) swallowing necessitates effective oral preparation of
should be assessed. Many children with CP have an food, formation of a food bolus, oral transit and then
element of dystonia. This is likely to further interfere propulsion of the bolus through the pharynx with the
with feeding ability and a trial of L-dopa may be appro- airway protected. Aspiration occurs when this proc-
priate. Mobility level is relevant to assessing energy ess fails, allowing materials to pass below the vocal
requirements and dietary intake should be appropriate cords into the trachea and lungs. Aspiration occurs in
to energy expenditure. as many as 68–70% of children with severe motor dis-
ability.25 26 Aspiration may be associated with specific
Oral motor skills clinical signs (table 1), or may occur silently.
Full assessment necessitates evaluation of oral motor As well as identifying aspiration, videofluoroscopy
skills at rest and during feeding. Assessment of jaw provides useful information on optimum feeding
stability, movement and tone of the lips, cheeks position, rate of feeding and appropriate textures.
and tongue is important. Significant overbites are Identification of the phase during which aspiration
common in children with CP and affect biting and occurs informs decisions about whether or not a child
chewing. Tonic biting may also be problematic. Jaw can eat and drink safely. For some children, oral feed-
instability limits graded opening and closure, impair- ing will not be a safe option, leading to recommenda-
ing manipulation of food in the mouth and leading to tion of gastrostomy insertion. The reasons for doing
poor bolus formation and swallowing difficulty. Jaw the videofluoroscopy and possible outcomes should be
thrusting and retraction may cause difficulties taking clear to parents in advance of the assessment.
food from a spoon, drinking, retaining and manipu-
lating food within the mouth, bolus formation and Seating/positioning
safe and effective swallowing. Consideration and An assessment of the child’s usual seating arrangement
management of mouth and jaw movements are cen- for feeding is helpful. This can often be carried out
tral to any feeding plan. in clinics where the relevant equipment is available.
The lips also play an important role in effective feed- Parents’ mobile telephone video clips are useful for
ing. The lips may be hypotonic, hypertonic or have a this purpose. Home and school visits by an OT are

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helpful to evaluate seating and the feeding environ- lower oesophageal pH monitoring to identify sig-
ment. Head position affects the ability to swallow and nificant GOR and videofluoroscopy to assess risk of
maintain a safe airway. Minor alterations to the posi- aspiration. A simultaneous antireflux procedure, for
tion of the head and body during feeding can improve example, fundoplication, may be indicated in children
feeding safety and ability. Ideally, the hips and knees with significant GOR. Complications of gastrostomy
should be at right angles to the body, and the feet sup- feeding include anaesthetic complications, oesophageal
ported or on a firm surface. This relies on some flex- laceration, pneumoperitoneum, peritonitis, colonic
ibility at the hips, knees, ankles, shoulders and spine. perforation and cologastric fistula formation. Later
A midline head position should be maintained, with a complications include stoma leakage, cellulitis, gran-
slight chin tuck, avoiding neck extension. Depending ulation tissue formation around the gastrostomy site
on local set-up, an OT or a PT can advise on suitable and displacement. Gastrostomy insertion may worsen
specialist seating options. Seating suitability requires GOR, necessitating the use of antireflux medication or
regular re-assessment as the child grows. surgery. Further trials evaluating the efficacy of medical
versus surgical management of GOR in children with
Management
gastrostomies are needed to establish best practice.41
Feeding intervention should aim to achieve appropri-
An immobile child with low-energy requirements may
ate nutrition and growth within the limits of the child’s
be overfed via their GT. Close monitoring is essential
neurological condition. Intervention becomes neces-
to prevent excessive weight gain. One study examin-
sary when there is evidence of potentially unsafe feed-
ing body composition and total energy expenditure in
ing, initial evidence of poor nutrition with or without
40 gastrostomy-fed children with spastic quadriplegic
growth failure. This may involve dietetic monitoring
CP demonstrated significantly higher body fat content
of the use of feeding intervention strategies which sup-
and lower lean body mass than a reference population
plement the normal diet with glucose polymers with
of neurologically normal children.42 Commercially
or without long-chain triglycerides to increase calorie
available enteral formulae developed for neurologi-
intake, the use of hypercaloric or high-energy-density
cally normal children may be associated with increased
feeds, or gastrostomy tube (GT) insertion.
risk of overfeeding in immobile children with CP. A
follow-on study of children with severe spastic quad-
Feeding intervention strategies riplegic CP and oral motor dysfunction examined the
Evidence to support the use of feeding intervention effects of a low-energy-dense, micronutrient-complete,
strategies for children with CP is limited, but suggests high-fibre feed on growth and body composition.
potential benefits from interventions including individ- Appropriate growth was maintained without dispro-
ualised positioning for feeding,27–29 alteration of food portionate rise in fat mass or fat percentage among
consistency30 and use of oral appliances.31–34 Evidence trial participants.43
is conflicting concerning the use of oral sensorimotor The use of gastrostomy feeding for children with CP
treatment programmes. The only randomised con- has provoked some controversy. One study reported
trol trial did not suggest benefit35 but included only a negative impact of GT feeding on the survival of
20 children. One small study employing less robust children with disabilities.44 A prospective longitudinal
methodology33and two case series36 37 reported some study showed no increase in respiratory morbidity or
benefits, while a larger study found no improvements mortality in children with CP fed by GT.45 A parallel
following use.38 Feeding devices (an electric feeder) are study demonstrated significant improvements in paren-
unlikely to be helpful in enhancing feeding efficien- tal QoL following institution of GT feeding.46 These
cy.39 40 Most of the available studies use comparison or findings were not upheld by a prospective longitudinal
control groups and include relatively small numbers of study examining the impact of GT insertion on global
children. There is an urgent need for adequately pow- and health-related QoL (HR-QoL) at 6 and 12 months
ered randomised control trials offering definitive guid- following GT insertion.47 However, parents reported
ance on best management. a positive impact of GT insertion on ease of feeding
and medication administration, and felt that GT inser-
Indications for gastrostomy feeding tion had a positive impact on their child’s health.47 In a
GT feeding is indicated if oral feeding is unsafe, when further study, the majority of parents of children with
nutrition cannot be maintained orally or daily feeding gastrostomies reported benefits secondary to reduced
time is prolonged. What parents regard as a prolonged feeding time, improved physical comfort and decreased
feeding time varies depending on parental opinion, but burden of care. Reduced anxieties related to safety of
a definition of feeding time greater than 3 h per day is feeding, nutritional status, adequate hydration and
commonly used in clinical practice. Before GT inser- reduced dependence on one carer also contributed to
tion, a number of assessments are advisable. These positive views towards gastrostomies. Negative opin-
include a contrast study to exclude hiatus hernia, ions resulted from complications of GT insertion, inad-
assessment of respiratory function to determine the equate follow-up post insertion and a feeling of having
need for preoperative physiotherapy and antibiotics, been pressured into agreeing GT insertion.23

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Sensitivity to the complex issues surrounding GT account the child’s nutritional status, feeding abili-
insertion is important when approaching the subject ties, medical condition and associated gastrointesti-
of GT feeding. Inclusion of the family in the decision- nal problems, drug therapies, cognitive level, activity
making process is vital. The MDT around the child level and family members’ opinions and circumstances.
must be made fully aware of the potential benefits Careful multidisciplinary assessment and management
and disadvantages to the child in order to support the of feeding difficulties is important in order to achieve
family through the process. Disagreements between appropriate growth and nutrition in children with neu-
parents, carers (eg, those feeding the child at school rodevelopmental disability. Failure to do so may result
or in respite care) and clinicians about the safety of in inadequate growth, suboptimal neurodevelopmental
oral feeding, and the need for GT insertion do occur. outcome and poor general health. Management plans
Clinicians should seek the advice of colleagues when should be sensitive to individual family circumstances
necessary; referral to a regional feeding clinic or to a and priorities, while keeping child welfare paramount.
neurodisability specialist may be helpful. Very occasion-
ally, it becomes necessary to consider whether the oral Funding This article received no specific funding;
feeding desired by parents or carers or both is harmful however, Dr Morag Andrew’s salary is provided
for the child and in their best interests. Once again, by the Oxford Biomedical Research Centre.
discussion with colleagues and referral to a specialist Competing interests None.
clinic becomes helpful in helping parents see poten- Provenance and peer review Commissioned;
tial dangers for their child. When absolutely necessary, externally peer reviewed.
managing issues through child protection routes may
require consideration. REFERENCES
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Feeding difficulties in children with cerebral


palsy
Morag J Andrew, Jeremy R Parr and Peter B Sullivan

Arch Dis Child Educ Pract Ed 2012 97: 222-229 originally published
online January 31, 2012
doi: 10.1136/archdischild-2011-300914

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