Assessment and management of nutrition and growth in rett syndrome

Journal of Pediatric Gastroenterology and Nutrition

Volumn 57, Issue 4, 2013, Pages 451-460

  Leonard, Helen ^a   Ravikumara, Madhur ^b   Baikie, Gordon ^c   Naseem, Nusrat ^a   Ellaway, Carolyn ^d   Percy, Alan ^e   Abraham, Suzanne ^f   Geerts, Suzanne ^e   Lane, Jane ^e   Jones, Mary ^g   Bathgate, Katherine ^a   Downs, Jenny ^a  

^a UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^b PRINCESS MARGARET HOSPITAL FOR CHILDREN   (Australia)

^c ROYAL CHILDREN'S HOSPITAL   (Australia)

^d UNIVERSITY OF SYDNEY   (Australia)

^e UNIVERSITY OF ALABAMA AT BIRMINGHAM   (United States)

^f ALBERT EINSTEIN COLLEGE OF MEDICINE   (United States)

^g CHILDREN S HOSPITAL OAKLAND   (United States)

Author keywords

Feeding difficulties; Gastrointestinal; Growth; Rett syndrome

Indexed keywords

ANTHROPOMETRY; ARTICLE; BODY MASS; CALORIC INTAKE; CHILD; CLINICAL ASSESSMENT; CLINICAL PRACTICE; CONSENSUS; DELPHI STUDY; E-MAIL; FEEDING BEHAVIOR; FEEDING DIFFICULTY; FEMALE; GASTROSTOMY; HUMAN; NUTRIENT MANAGEMENT; NUTRITIONAL ASSESSMENT; OPEN ENDED QUESTIONNAIRE; PRESCHOOL CHILD; PRIORITY JOURNAL; RETT SYNDROME; SCHOOL CHILD; WEIGHT GAIN;

BODY MASS INDEX; DELPHI TECHNIQUE; FEEDING BEHAVIOR; FEMALE; GASTROSTOMY; GROWTH DISORDERS; HUMANS; INFANT; NUTRITION ASSESSMENT; NUTRITIONAL REQUIREMENTS; NUTRITIONAL STATUS; NUTRITIONAL SUPPORT; QUESTIONNAIRES; RETT SYNDROME; WEIGHT GAIN;

EID: 84885218655     PISSN: 02772116     EISSN: 15364801     Source Type: Journal    
DOI: 10.1097/MPG.0b013e31829e0b65     Document Type: Article

References (54)

1. Amir RE, Van den Veyver IB, Schultz R, et al. Influence of mutation type and X chromosome inactivation on Rett syndrome phenotypes. Ann Neurol 2000;47:670-9.
2. Neul JL, Kaufmann WE, Glaze DG, et al. Rett syndrome: revised diagnostic criteria and nomenclature. Ann Neurol 2010;68:944.
3. Jian L, Nagarajan L, de Klerk N, et al. Seizures in Rett syndrome: an overview from a one-year calendar study. Eur J Paediatr Neurol 2007;11:310-7.
4. Ager S, Fyfe S, Christodoulou J, et al. Predictors of scoliosis in Rett syndrome. J Child Neurol 2006;21:809-13.
5. Motil KJ, Caeg E, Barrish JO, et al. Gastrointestinal and nutritional problems occur frequently throughout life in girls and women with Rett syndrome. J Pediatr Gastroenterol Nutr 2012;55:292-8.
6. Oddy WH, Webb KG, Baikie G, et al. Feeding experiences and growth status in a Rett syndrome population. J Pediatr Gastroenterol Nutr 2007;45:582-90.
7. Hagberg B, Hanefeld F, Percy A, et al. An update on clinically applicable diagnostic criteria in Rett syndrome. Comments to Rett Syndrome Clinical Criteria Consensus Panel Satellite to European Paediatric Neurology Society Meeting, Baden Baden, Germany, 11 September 2001. Eur J Paediatr Neurol 2002;6:293-7.
8. Schultz RJ, Glaze DG, Motil KJ, et al. The pattern of growth failure in Rett syndrome. Am J Dis Child 1993;147:633-7.
9. Cass H, Reilly S, Owen L, et al. Findings from a multidisciplinary clinical case series of females with Rett syndrome. Dev Med Child Neurol 2003;45:325-37.
10. Thommessen M, Kase BF, Heiberg A. Growth and nutrition in 10 girls with Rett syndrome. Acta Paediatr 1992;81:686-90.
11. Bebbington A, Anderson A, Ravine D, et al. Investigating genotypephenotype relationships in Rett syndrome using an international dataset. Neurology 2008;70:868-75.
12. Percy AK, Armstrong DD. Rett syndrome: a pervasive disorder of growth. Pediatr Res 1988;23:556A.
13. Isaacs JS, Murdock A, Lane J, et al. Eating difficulties in girls with Rett syndrome compared with other developmental disabilities. J Am Diet Assoc 2003;103:224-30.
14. Budden SS. Rett-syndrome-habilitation and management reviewed. Eur Child Adolesc Psychiatry 1997;6 (suppl 1):103-7.
15. Marchand V, Motil KJ. Nutrition support for neurologically impaired children: a clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. J Pediatr Gastroenterol Nutr 2006;43:123-35.
16. Humphries K, Traci MA, Seekins T. Nutrition and adults with intellectual or developmental disabilities: systematic literature review results. Intellect Dev Disabil 2009;47:163-85.
17. Caring for Children and Young People in the Community Receiving Enteral Tube Feeding. Edinburgh: NHS Quality Improvement; 2007.
18. Leonard H, Slack Smith L, Phillips T, et al. How can the Internet help parents of children with rare neurologic disorders? J Child Neurol 2004;19:902-7.
19. Louise S, Fyfe S, Bebbington A. InterRett, a model for international data collection in a rare genetic disorder. Res Autism Spectr Disord 2009;3:639-59.
20. Sign 50: A guideline developer's handbook. http://www.sign.ac.uk/pdf/ sign50.pdf. Published 2011. Accessed August 16, 2013.
21. Reilly S, Skuse D, Mathisen B, et al. The objective rating of oral-motor functions during feeding. Dysphagia 1995;10:177-91.
22. Skuse D, Stevenson J, Reilly S, et al. Schedule for oral-motor assessment (SOMA): methods of validation. Dysphagia 1995;10:192-202.
23. Feinberg AN, Feinberg LA, Atay OK. Gastrointestinal care of children and adolescents with developmental disabilities. Pediatr Clin North Am 2008;55:1343-58ix.
24. Kennedy M, McCombie L, Dawes P, et al. Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care. J Intellect Disabil Res 1997;41:430-6.
25. Rice MA, Haas RH. The nutritional aspects of Rett syndrome. J Child Neurol 1988;3 (suppl):S35-42.
26. Schwartzman F, Vitolo MR, Schwartzman JS, et al. Eating practices, nutritional status and constipation in patients with Rett syndrome. Arq Gastroenterol 2008;45:284-9.
27. Chadwick DD, Jolliffe J, Goldbart J. Adherence to eating and drinking guidelines for adults with intellectual disabilities and dysphagia. Am J Ment Retard 2003;108:202-11.
28. Lavas J, Slotte A, Jochym-Nygren M, et al. Communication and eating proficiency in 125 females with Rett syndrome: the Swedish Rett center survey. Disabil Rehabil 2006;28:1267-79.
29. Morton RE, Bonas R, Minford J, et al. Feeding ability in Rett syndrome. Dev Med Child Neurol 1997;39:331-5.
30. Qvarfordt I, Engerstrom IW, Eliasson AC. Guided eating or feeding: three girls with Rett syndrome. Scand J Occup Ther 2009;16:33-9.
31. Cook S, Hooper V, Nasser R, et al. Effect of gastrostomy on growth in children with neurodevelopmental disabilities. Can J Diet Pract Res 2005;66:19-24.
32. Craig GM, Scambler G, Spitz L. Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support. Dev Med Child Neurol 2003;45:183-8.
33. Motil KJ, Morrissey M, Caeg E, et al. Gastrostomy placement improves height and weight gain in girls with Rett syndrome. J Pediatr Gastroenterol Nutr 2009;49:237-42.
34. Fortunato JE, Darbari A, Desbiens J, et al. Esophageal motility disturbances in children with Rett syndrome: correlation with X-linked methyl Cpg binding protein (Mecp2) gene mutations: 90. J Pediatr Gastroenterol Nutr 2005;41:520.
35. Godbole P, Margabanthu G, Crabbe DC, et al. Limitations and uses of gastrojejunal feeding tubes. Arch Dis Child 2002;86:134-7.
36. Tarquinio DC, Motil KJ, Hou W, et al. Growth failure and outcome in Rett syndrome specific growth references. Neurology 2012;79: 1653-61.
37. Craig GM, Carr LJ, Cass H, et al. Medical, surgical, and health outcomes of gastrostomy feeding. Dev Med Child Neurol 2006;48: 353-60.
38. Schwarz SM. Feeding disorders in children with developmental disabilities. Infants Young Child 2003;16:317-30.
39. Motil KJ, Schultz RJ, Browning K, et al. Oropharyngeal dysfunction and gastroesophageal dysmotility are present in girls and women with Rett syndrome. J Pediatr Gastroenterol Nutr 1999;29:31-7.
40. Percy AK. Rett syndrome: from recognition to diagnosis to intervention. Expert Rev Endocrinol Metab 2008;3:327.
41. Budden SS. Management of Rett syndrome-a ten year experience. Neuropediatrics 1995;26:75-7.
42. Morton RE, Bonas R, Minford J, et al. Respiration patterns during feeding in Rett syndrome. Dev Med Child Neurol 1997;39: 607-13.
43. Taylor HM. Pneumonia frequencies with different enteral tube feeding access sites. Am J Mental Retard 2002;107:175-80.
44. Stevenson RD. Use of segmental measures to estimate stature in children with cerebral palsy. Arch Pediatr Adolesc Med 1995;149: 658-62.
45. Motil KJ, Schultz RJ, Wong WW, et al. Increased energy expenditure associated with repetitive involuntary movement does not contribute to growth failure in girls with rett syndrome. J Pediatr 1998;132:228-33.
46. Bebbington A, Percy A, Christodoulou J, et al. Updating the profile of C-terminal MECP2 deletions in Rett syndrome. J Med Genet 2010;47:242-8.
47. Campbell SM, Braspenning J, Hutchinson A, et al. Research methods used in developing and applying quality indicators in primary care. BMJ 2003;326:816-9.
48. Downs J, Bergman A, Carter P, et al. Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidence. Spine 2009;34:E607-17.
49. Downs J, Bebbington A, Jacoby P, et al. Level of purposeful hand function as a marker of clinical severity in Rett syndrome. Dev Med Child Neurol 2010;52:817-23.
50. Hagberg B. Clinical manifestations and stages of rett syndrome. Ment Retard Dev Disabil Res Rev 2002;8:61-5.
51. Larsson G, Lindstrom B, Engerstrom IW. Rett syndrome from a family perspective: the Swedish Rett Center survey. Brain Dev 2005;27(suppl 1):S14-9.
52. Piazza CC, Anderson C, Fisher W. Teaching self-feeding skills to patients with Rett syndrome. Dev Med Child Neurol 1993;35:991-6.
53. Baldassarre E, Capuano G, Valenti G, et al. A case of massive gastric necrosis in a young girl with Rett Syndrome. Brain Dev 2006;28:49-51.
54. Shah MB, Bittner JG, Edwards MA. Rett syndrome and gastric perforation. Am Surg 2008;74:315-7.