Purpose/Method: In this paper we review the existing literature on factors
that contribute to growth failure in Rett syndrome (RS) with particular emp
hasis on the extent and nature of the feeding: difficulties that arise. Dat
a on growth and feeding related problems, collected over four years in a sp
ecialized clinic for females with Rett syndrome are presented and managemen
t protocols developed in the clinic discussed.
Results/Conclusion: Feeding related problems and growth failure occur commo
nly in Rett syndrome yet our understanding of the mechanisms causing growth
failure are poorly understood. Both nutritional and non-nutritional factor
s are thought to contribute and it has not been possible to develop efficac
ious intervention strategies. Consequently, clinical management of growth f
ailure in Rett syndrome is not evidence based.