Growth and nutrition in Rett syndrome.

PURPOSE/METHOD: In this paper we review the existing literature on factors that contribute to growth failure in Rett syndrome (RS) with particular emphasis on the extent and nature of the feeding difficulties that arise. Data on growth and feeding related problems, collected over four years in a specialized clinic for females with Rett syndrome are presented and management protocols developed in the clinic discussed.

RESULTS/CONCLUSION: Feeding related problems and growth failure occur commonly in Rett syndrome yet our understanding of the mechanisms causing growth failure are poorly understood. Both nutritional and non-nutritional factors are thought to contribute and it has not been possible to develop efficacious intervention strategies. Consequently, clinical management of growth failure in Rett syndrome is not evidence based.