Rett syndrome is a rare neurological disorder that leads to impairments in many different aspects of a child's life. Rett syndrome predominantly affects females with symptoms ranging from loss of mobility, speech, purposeful hand movement and muscle tone. Very rarely are males diagnosed with Rett syndrome. Around the age of 6 to 18 months, infants start to experience regression, which is the loss of previously acquired skills. They typically lose the ability to communicate, walk, experience breathing and heart issues, swallowing and digestion difficulties.
Treatment of Rett syndrome often requires an interdisciplinary team of health professionals, including a physician, speech-language pathologist, physical therapist, nutritionist and occupational therapist. Occupational therapists work with clients with Rett syndrome and their families to improve function in daily activities, such as grooming, sleeping, dressing, and feeding. Regarding feeding, the development of mouth functions such as chewing are often delayed, which can cause problems associated with swallowing. Occupational therapists educate and coach families to develop appropriate knowledge and skills required for safe feeding. Sleep difficulties such as prolonged wakefulness are also common for clients with Rett syndrome. Occupational therapists can help clients and their families develop strategies to get a good and restful night's sleep.
Although there is currently no cure for Rett syndrome, people with Rett syndrome have improved health and life span with proper healthcare management.
For more information or resources to support families with Rett syndrome, visit www.rettsyndrome.org.
Reference: Smeets, E. E., Pelc, K., & Dan, B. (2012). Rett Syndrome. Molecular syndromology, 2(3-5), 113–127. https://doi.org/10.1159/000337637