Authors:
Leonard H, Ravikumara M, Baikie G, Naseem N, Ellaway C, Percy A, Abraham S, Geerts, S, Lane, J, Jones, M, Bathgate K, Downs J
Authors notes:
Journal of Pediatric Gastroenterology and Nutrition. 2013;57(4):451-460
Keywords:
Feeding difficulties, Gastrointestinal, Growth, Rett syndrome
Abstract:
We developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.
Agreement was achieved on 101 of 112 statements.
A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs.
A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice.
Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.
These evidence- and consensus-based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.