Gastrostomv and the Disabled Child Feeding difficulties in disabled children CHILDREN with neurological impairment frequently have oropharyngeal incoordination which may predispose to a state of chronic undernutrition. There are no reliable data on the scale of this problem, but it is probably considerable. For instance, the incidence of cerebral palsy is around two children per 1000 live births’, and almost one-third of these will have severe motor impairment2. Typical features of a child with oromotor impairment include poor lipclosure, excessive drooling, lip retraction, tonic biting, inability to lateralize the tongue and tongue-thrusting3. Incoordination of swallowing produces much choking and coughing during feeding. Such children eat very slowly and may spill more than half the food, that is offered to them4; some mothers spend up to seven hours a day feeding their disabled child5. These problems may be exacerbated by behavioural disturbance in the child; for those who are institutionalized, a poor patient-to-caregiver ratio may lead directly to undernutrition. The undernutrition as a result of inadequate intake of food is often accepted as an inevitable consequence of a child’s neurological impairment.

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predispose these patients to infection, particularly of the lungs and the urinary tract. Furthermore, healing of pressure sores is delayed in children with malnutrition. In view of these various complications, it is clear that correction of malnutrition is central to the management of neurologically disabled children4.

Estimation of nutritional requirements Assessment of the energy needs of children with neuromuscular impairment is difficult, since no appropriate reference standards exist for this group. The recommended daily allowance” (RDA) for chronological age is often used, but is probably inaccurate*. Skeletal deformity or the possible co-existence of a growth abnormality makes height measurements of such children meaningless. For children with cerebral palsy, triceps skin-fold thickness and mid upper-arm circumference may be much more useful indices of nutritional status4. Different children have different needs. Variations in muscle tone and levels of activity influence energy expenditure, and therefore calorie requirements. Individuals with severe nutritional compromise require added energy for catch-up growth. KRICK and co-workers have proposed a formula which takes into account variables such as muscle tone, activity levels and catch-up growth for calculating energy needs for children with cerebral palsy (see pp. 481-487). However, much of the early literature on this subject is inconclusive and a lot of work remains to be done in this fieldI0-l3.

Adverse consequences of undernutrition Sub-optimal nutrition resulting from inadequate intake has many consequences. Achieving optimal nutritional intake In addition to linear growth-failure, there is a decrease in muscle strength, which in In order to ensure an adequate intake of the respiratory System reduces the effec- . nutrients, it is necessary to consider the energy density of the food offered, the tiveness of the cough reflex and pre-’ volume that can be successfully admindisposes to aspiration pneumonia; in the istered and the time available for feedingI4. limbs it causes a decreased circulation Several strategems are employed for time, resulting in the cold, mottled children with swallowing difficulties to peripheries frequently seen in wasted make feeding more effective. Oral-motor cerebral-palsied children4. Undernutrition therapy aims to improve lingual function is associated with a decrease in cerebral function6, with possible exacerbation of and to stimulate .the swallowing reflex the existing neurological impairment; and pharyngeal peristalsis3. However, conversely, significant developmental even intensive oral-motor therapy may not be effective in achieving normal, progress often accompanies improved nutritional status’. Disturbances in the . standards of growth. Oral-motor moveimmune system secondary to malnutrition ments often improve spontaneously after

nutritional rehabilitati~n’~. If oral-motor therapy is the sole form of therapy, it is absolutely essential that growth be closely monitored to identify children needing adjunctive methods of feeding”. These would include feeding via a nasogastric tube or possibly a gastrostomy. Enteral feeds, with high nutrient density, may be introduced through a feeding-tube by either bolus administration or continuously with a pump.

Nasogastric tube-feeding Nasogastric (NG) tube-feeding, while often very useful in an acute situation, is less useful for chronic usage and carries a number of disadvantages. It is unpleasant and uncomfortable for the child and it may erode the nasal and oesophageal mucosae. The presence of an NG tube interferes with the swallowing process and suppresses normal oral feeding, and if a tube has been in place for a long time it may be hard to re-establish oral feeding. Gastrostomy feeding There is considerable evidence that feeding via a gastrostomy is reliably associated with weight gain; furthermore, the earlier it is instituted the better the results will be in terms of growth7,Is, 16. It is impbrtant to remember that eating is a complex social and emotional function, as well as being the means of nutrition, therefore food must continue to be offered by mouth to children who.are fed via a gastrostomy. The indications for gastrostomy are inability to swallow, compromised growth and intolerance of or dependence (more than six wee&) on NG tube-feeding. ’ Conventional surgical gastrostomy (typically, the Stamm gastrostomy) requires a laparotomy. More recently, however, the less invasive technique of percutaneous endoscopic gastrostomy (PEG) has been employedl7-I9. This procedure has the great advantage of not requiring a laparotomy, and the tubes can be changed without an anaesthetic.’There are a number of advantages of a PEG over NG tubes: a PEG is much more comfortable for the patient and there is no erosion of the nasal or oesophageal mucosa; NG tubes are commonly pulled out by patients, whereas it is virtually

impossible to dislodge a PEG, either accidentally or deliberately; and finally, unlike NG tubes, a PEG is unobtrustive and aesthetically more acceptable to both patients and carers. A gastrostomy reduces the duration of feeding and allows more time to be spent on other aspects of the social and motor development of a disabled child.

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Gastrostomy feeding and gastrooesophageal reflux Feeding via a gastrostomy may predispose to gastro-oesophageal reflux (GOR)as a result of the increased pressure of the feed2’, or, in the case of the Stamm gastrostomy, by compromise of the lower oesophageal sphincter2“. Rates for this complication of gastrostomy feeding have been variably quoted at 14 per cent2’, 25 per cent” and 44 per cent23. This is an important issue, as neurologically disabled children already have a higher incidence (variously reported as 15 per cent24, 27 per cent” and 65 per cent22)of GOR than normal children. Several factors contribute to this, including prolonged adoption of the supine position and increased abdominal compression as a result of scoliosis and spasticity of the abdominal muscles. In children with cerebral palsy, the lower oesophageal sphincter pressure is decreased and flaccidity of the diaphragm and distortion of the diaphragmatic crura, together with a fsilure or wave propagation in the oesophagus, all contribute to a greater propensity for acid reflux from the stomach into the oesophagus. GOR is associated with chronic vomiting, growth retardation, recurrent aspiration pneumonia, dysphagia, oesophagitis, grimacing and neck hyperextension (Sandifer syndrome). Therefore it is particularly important to exclude GOR before gastrostomy, and this is more reliably achieved by lower oesophageal PH monitoring*’.

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Anti-reflux procedures and gastrostomies The question arises of whether a ‘protective’ anti-reflwl. procedure, typically a Nissen fundoplication, should be routinely performed with a g a s t r ~ s t o m y ~ The ~-~~. . anti-reflux procedure, however, is not without complications: if the fundopli-

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cation is too tight, air-trapping can occur within the stomach-‘gas-bloat syndrome’ -which may cause appreciable pain and distress. In these circumstances, the gastrostomy may have to be used to release this gas. Less than one-third of cases of PEG eventually need fundoplication26*27. In WHEATLEY’S study of 148 children referred for feeding gastrostomy, 105 had evidence of GOR and proceeded to gastrostomy and fundoplication; 43 children had no evidence of reflux, only six (14 per cent) of whom developed GOR following gastrostrom?’. These data suggest that 86 per cent of children with a negative preoperative evaluation for GOR would undergo operation needlessly if a protective anti-reflux procedure were performed at the time of gastrostomy placement. WHEATLEYand colleagues concluded that a protective anti-reflux procedure is not indicated with gastrostomy. PEG is now the procedure of choice for gastrostomy feeding in disabled children without GOR.

Management of a gastrostomy Any form of gastrostomy requires meticulous pre-operative assessment and this is best performed by a multidisciplinary

team, with contributions from dieticians

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and speech therapists with a special interest in the feeding problems of disabled children. Speech therapists can assist in encouraging oral feeding-which must continue, even if the child is to receive most of the nutritional intake via ‘. galrostomy. A short period of parenteral nutrition may be necessary to restore hutritional status before the procedure, together with intensive chest physiotherapy to .improve pulmonary function. Once the gastrostomy is in place, support for the parents will be necessary, but they readily learn to care for the site and to administer feeds themselves. The costs of the gastrostomy tube and connectors vary, bur are in the region of €90; arrangements may need to be made to ensure that parents : have the necessary financial support if they cannot be supplied free by a health service. The advent of the gastrostomy ‘button”*a skin-level nonLrefluxing device without the need for a permanent tube-has further I

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facilitated the home management of 1 ngterm gastrostomy feeding of disabled children. Follow-up is important after a gastrostomy to monitor the child’s groyth and to look for evidence of vomiting or haematemesis, which may suggest GOR and oesophagitis. If these symptoms occur, lower oesophageal pH monitoring should be performed; fibre-optic oesophagoscopy may also assist diagnosis. Should GOR subsequently develop, symptoms can be controlled by continuous pump-feeding rather than bolus feeding2’. It may be possible to pass a transpyloric jejunal feeding-tube through a gastrostomy tube in an attempt to minimize reflux from the stomach. Prokinetic agents (e.g. cisapride) and Hz-reCeptOr antagonists (e.g. ranitidine) are useful for controlling the symptoms of GOR. ‘Dumbing syndrome’ ,is another potential and possibly under-diagnosed complication of gastrostomy feeding. Adults with dumping syndrome after gastrostomy complain of epigastric discomfort and nausea; they are often sweating and pale as blood pools around

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suddenly entered the small intestine. In disabled children the same signs and symptoms can occur, but they may not be so readily recognized. Dumping syndrome is not easy to manage in these children, although dietary management-increasing the frequency and decreasing the volume and osmolality of feeds-can reduce the associated symptoms.

Conclusion Gastrostomy is not a panacea .for nutritional disorders and growth retardation in disabled children. There are definite mortality (1 per cent) and morbidity (13 per cent) risks associated with placement of a gastrostomy tubel’. Feeding via gastrostomy may not improve nutritional status, and especially may not increase linear height. Moreover, following gastrostomy feeding, up to one-fifth of patients actually will be over-fed, consequently becoming overweight and more difficult t o manage16. Nevertheless, with careful selection, + pre-operative assessment and postoperative follow-up, the use of gastrostomy feeding does

facilitate the care of disabled children, and improves the quality of their lives and those of their carers. PETERB. SULLIVAN Department of Child Health, Westminster Children’s Hospital, Vincent Square, London SWlP 2NS. References I . Paneth, N., Kiely, J. (1984) ‘The frequency of cerebral palsy: a review of population studies in industrialised nations since 1950.’ In Stanley, F., Alberman, E. (Eds.) The Epidemiology of the Cerebral Palsies. Clinics in Developmental Medicine, No. 87. London: S.I.M.P. with Blackwell Scieniific; Philadelphia: Lippincott. pp. 46-56. 2. Palmer, S., Thompson, R. J. Jr., Linschied, T. R. 0975) ‘Applied behavior analysis in tht treatment of childhood feeding problems. Developmental Medicine and Child Neurology, 17, 333-339. 3. Ottenbacher. K., Bundy, A., Short, M. A. (1983) ‘The development and treatment of oral-motor dysfunction: a review of clinical research.’ Physical and Occupational Therapy in Pediatrics. 3, 1-13. 4. 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, 734-739. 5 . Johnson, C. B., Deitz, J. C. (1985) ‘Time use of mothers with preschool children: a pilot study.’ American Journal of Occupational Therapy, 39, 578-583. 6. Ballabriga, A. (1990) ‘Malnutrution and the central nervous system.’ In Suskind, R. M. (Ed.) The Malnourrrhed Child. Nestle Nutrition Workshop Series, Vol. 19. New

York: Vevey Raven Press. pp. 177-195.

7. Sanders, K. D., Cox, K., Cannon, R., Blanchard, D., Pitcher, J., Papathakis, P., Varella, L., Maughan, R. (1990) ‘Growth response to enteral feeding by children with cerebral palsy.’ Journal of Parenteral and , Enteral Nutrition, 14, 23-26. 8. Krick, J., van Duyn, M. A. S. (1984) ‘The relationship between oral-motor involvement and growth: a pilot study in a pediatric population with cerebral palsy.’ Journal of the American Dietetic Association, 84, 555-559. 9. Krick, J., Murphy, P. E., Markham, J. F. B., Shapiro, B. K. (1992) ‘A proposed formula for calculating energy needs of children with cerebral palsy.’ Developmental Medicine and Child Netrrology, 34, OOO-OOO. 10. Eddy, T. P., Nicholson, A. L., Wheeler, E. F. (1965) ‘Energy expenditures and dietary intakes in cerebral palsy.’ Developmental Medicine and Child Neurology, 7, 377-386. 11. Hammond, M. I., Lewis, M. N., Johnson, E. W. (1966) ‘A nutritional study of cerebral palsied children.’ Journal of the American Dietetic Association, 49, 196-201. 12. Roberts, G. E., Clayton, B. E. (1969) ‘Some findings arising out of a survey of mentally retarded children. Part 11: Physical growth and development .’ Developmental Medicine and Child Neurology, 11, 584-594. 13. Lancet (1990) ‘Growth and nutrition in children

with cerebral palsy.’ Lancet, 335, 1253-1254. (Editorial.) 14. Gisel, E. G., Patrick, J. (1988) ‘Identification of children with cerebral palsy unable to maintain a normal nutritional state.’ Lancer, 1, 283-286. 15. Shapiro. B. K., Green, P., Krick, J., Allen, D., Capute, A. J. (1986) ‘Growth of severely

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impaired children: neurological versus nutritional factors.’ Developmental Medicine and Child Neurology, 28, 729-133. Rempel, G. R., Colwell, S. O., Nelson, R. P. (1988) ‘Growth in children with cerebral palsy fed via gastrostomy.’ Pediatrics, 82, 857-862. Ponsky, J. L., Gauderer, M. W. L. (1981) ‘Percutaneous endoscopic gastrostomy: a non; operative technique for feeding gastrostomy. Gastrointestinal Endoscopy, 27, 9-1 I . Larson, D. E., Burton, D. D., Schroeder, K. W., DiMagno, E. P. (1987) ‘Percutaneous endoscopic gastrostomy: indications, success, complica,tions and mortality in 314 consecutive patients. Gastroenterology, 93, 48-52. Gauderer, M. W. L. (1991) ‘Percutaneous endoscopic gastrostomy: a 10-year experience with 220 children.’ Journal of Pediatric Surgery, 26, 288-294. Wesley, J. R., Coran, A. G. (1981) ‘The need for evaluation of gastroesophageal reflux in brain-damaged children referred for feeding gastrostomy.’ Journal of Pediatric Surgery, 16, 866-871. Wheailey, M. J., Wesley, J. R., Tkach, D. M., Coran, A. G. (1991) ‘Long-term follow-up of brain-damaged children requiring feeding gastrostomy: should an anti-reflux procedure always be performed?’ Journal of Pediatric Surgery, 26, 301-305.

22. Mollitt, D. L., Golladay, E. S . , Seibert, J. J.

(1985) ‘Symptomatic gastroesophageal reflux following gastrostomy in neurologically impaired patients.’ Pediatrics, 75, 1124-1 126. 23. Langer, J. C., Wesson, D. A., Ein, S. H., Filler,

R. M., Shandling, B., Superina, R. A., Papa,

M. (1988) ‘Feeding gastrostomy in neurologically impaired children: is an antireflux procedure necessary?’ Journal of Pediatric ’ Gastroenterology and Nutrition, 7, 837-841. 24. Sondheimer, J. M., Morns, B. A. (1979) ‘Gastroesophageal reflu‘x among severely retarded children.’ Journal of Pediarics, 94, 7 10-7 14. 25. Abraham, P., Burkitt, B. F. E. (1970) ‘Hiatus hernia and gastroesophageal reflux in children and adolescents with cerebral palsy.’ Australian Paediatric Journal, 6, 41-44. 26. Gauderer, M. W. L. (1988) ‘Feeding gstrostomy or feeding gastrostomy with an anti-reflux procedure?’ Journal of Pediatric Gastroenterology and Nutrition, 7, 795-796. 27. Grunow, J. E., Al-Hafidh, A. S.,Tunell, W. P. (1989) ‘Gastroesophageal reflux following percutaneous endoscopic gastrostomy in children.’ Journal of Pediatriq. Surgery, 24, 4245. 28. Gauderer, M. W. L., Olsen, M. M., Stellato, T. A., Dokler, M. L. (1988) ‘Feeding gastrostomy

“button”-experience and recommendations.’ Journal of Pediatric Surgery, 23, 24-28. 29. Berezin, S., Schwarz, S. M., Halata, M. S., Newman, L. J. (1986) ‘Gastroesophageal reflux secondary to gastrostomy tube placement.’ American Journal of Diseases of‘ Children, 140, 699-701.

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