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Neurodisability

Neurodevelopmental disabilities (neurodisabilities) are a diverse group of chronic disorders that can begin during the development process (including conception, birth, and periods of growth). They last throughout an individual’s lifetime and can include conditions such as autism, cerebral palsy, Down syndrome, epilepsy, multiple sclerosis, Rett syndrome, etc.[1] Cerebral palsy is the most common cause of physical disability in childhood, occurring in 2-3 in 1,000 children.[2,3]

Neurodisabilities have a significant impact on nutritional status, affecting nutrient intake, nutrient losses and energy expenditure, and are often accompanied by swallowing difficulties (dysphagia).[4,5] Cerebral palsy is the most common condition to create congenital neurological dysphagia.[6] As a consequence, a large proportion of children with neurodevelopmental disabilities are undernourished, e.g. 29-50% of patients with cerebral palsy, depending on the severity of their condition.[7] Poor growth is reported frequently in these children and may impact negatively on their physical and cognitive development, participation and quality of life in later childhood.[6]

Nutritional support should be an integral part of the management of neurologically impaired children.[7,8] Nutritional rehabilitation has been associated with improved overall health, catch-up growth, improved peripheral circulation, healing of decubitus ulcers, decreased spasticity, decreased irritability and improved gastro-oesophageal reflux in neurologically impaired children, improved quality of life of both the child and the carer and with many health-care cost benefits.[7,9-18]

Oral intake should be optimised when the swallow is safe, while enteral tube feeding should be initiated in children with oro-motor dysfunction who are at risk of aspiration, or in children unable to maintain an adequate nutritional status with oral intake alone. In cases where long-term nutritional intervention is required, a gastrostomy should be considered.[7] Gastrostomy placement in neurologically impaired children resulted in significant clinical benefits without significantly increasing costs, and it is concluded that the procedure is therefore cost-effective.[17]

Some children with neurodevelopmental disorders may use less energy if they are immobile. A feed that provides the right amount of protein, vitamins and minerals and with the appropriate energy level is essential to ensure these children’s needs are met without excess weight/fat gain. Severely disabled children have been found to increase their stores of fat rather than lean body mass as they gain weight following gastrostomy feeding using a standard paediatric tube feed, which suggests that the energy density of standard paediatric tube feeds (1kcal/ml) may be too high for many of these children.[19]

References

  1. Patel DR, Greydanus DE, Omar HA, Merrick J, eds. Neurodevelopmental disabilities. Clinical care for children and young adults. Springer, New York, 2011.
  2. Stanley F, Blair E, Alberman E. Cerebral Palsies: Epidemiology and Causal Pathways. Vol. 151. Mac Keith Press, London, 2000.
  3. www.cerebralpalsy.org
  4. Thommessen M, Riis G, Kase BF, et al. Energy and nutrient intakes of disabled children: do feeding problems make a difference? J Am Diet Assoc 1991;91:1522-5.
  5. Motion S, Northstone K, Emond A, et al. Early feeding problems in children with cerebral palsy: weight and neurodevelopmental outcomes. Dev Med Child Neurol 2002;44:40-3.
  6. Bell KL, Boyd RN, Tweedy SM, et al. A prospective, longitudinal study of growth, nutrition and sedentary behaviour in young children with cerebral palsy. BMC Public Health 2010;10:179 (doi: 10.1186/1471-2458-10-179).
  7. Marchand V; Canadian Paediatric Society, Nutrition and Gastroenterology Committee. Nutrition in neurologically impaired children. Paediatr Child Health 2009;14:395-401.
  8. Kuperminc MN, Stevenson RD. Growth and nutrition disorders in children with cerebral palsy. Dev Disabil Res Rev 2008;14:137-46.
  9. Samson-Fang L, Fung E, Stallings VA, et al. Relationship of nutritional status to health and societal participation in children with cerebral palsy. J Pediatr 2002;141:637-43.
  10. Patrick J, Boland M, Stoski D, et al. Rapid correction of wasting in children with cerebral palsy. Dev Med Child Neurol 1986;28:734-9.
  11. Shapiro BK, Green P, Krick J, et al. Growth of severely impaired children: Neurological versus nutritional factors. Dev Child Neurol 1986;28:729-33.
  12. Sanders KD, Cox K, Cannon R, et al. Growth response to enteral feeding by children with cerebral palsy. J Parenter Enteral Nutr 1990;14:23-6.
  13. Lewis D, Khoshoo V, Pencharz PB, et al. Impact of nutritional rehabilitation on gastroesophageal reflux in neurologically impaired children. J Pediatr Surg 1994;29:167-9.
  14. Craig GM, Carr LJ, Cass H, et al. Medical, surgical, and health outcomes of gastrostomy feeding. Dev Med Child Neurol 2006;48:353-60.
  15. Sullivan PB, Juszczak E, Bachlet AM, et al. Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy. Dev Med Child Neurol 2004;46:796-800.
  16. Avitsland TL, Kristensen C, Emblem R, et al. Percutaneous endoscopic gastrostomy in children: a safe technique with major symptom relief and high parental satisfaction. J Pediatr Gastroenterol Nutr 2006;43:624-8.
  17. Townsend JL, Craig G, Lawson M, et al. Cost-effectiveness of gastrostomy placement for children with neurodevelopmental disability. Arch Dis Child 2008;93:873-7.
  18. Stevenson RD, Conaway M, Chumlea WC, et al; North American Growth in Cerebral Palsy Study. Growth and health in children with moderate-to-severe cerebral palsy. Pediatrics 2006;118:1010-8.
  19. Bachlet A, Vernon-Roberts A, Stirling L, et al. Body composition in severely disabled children fed either orally or via gastrostomy. J Pediatr Gastroenterol Nutr 2003;36:525(O020).