Management of Rett syndrome: a ten year experience

Over the past 10 years (1983-1993) multidisciplinary team at the Child Development and Rehabilitation Center has diagnosed and evaluated 60 females with Rett syndrome aged 13 months to 43 years. Experience with comprehensive management is discussed with focus on feeding difficulties, communication needs, hand function, scoliosis, and deformities. Clinical and radiological assessment of feeding problems is important in deciding whether therapy will allay symptoms or a gastrostomy is indicated. Hand use can be facilitated with appropriate intervention, and a coordinated effort with a communication specialist can develop systems for environmental access. Aggressive physical therapy has been very effective in preventing progression of scoliosis and avoiding surgery. Asymmetrical function is commonly recognized in ambulatory females, and is of neurogenic origin. Psychosocial support and educational plan attempts to collaborate with community services and resources.