Although there is no cure for Rett syndrome, treatments are directed toward symptoms and providing support. The need for treatment and support doesn't end as children become older — it's usually necessary throughout life. Treating Rett syndrome requires a team approach.
Treatments that can help children and adults with Rett syndrome include:
Sept. 17, 2015
- Regular medical care. Management of symptoms and health problems may require a multispecialty team. Regular monitoring of physical changes such as scoliosis and GI and heart problems is needed.
- Medications. Though medications can't cure Rett syndrome, they may help control some signs and symptoms associated with the disorder, such as seizures, muscle stiffness, or problems with breathing, sleep, the GI tract or the heart.
- Physical therapy. Physical therapy and the use of braces or casts can help children who have scoliosis or require hand or joint support. In some cases, physical therapy can also help maintain movement, create a proper sitting position, and improve walking skills, balance and flexibility. Assistive devices may be helpful.
- Occupational therapy. Occupational therapy may improve purposeful use of the hands for activities such as dressing and feeding. If repetitive arm and hand movements are a problem, splints that restrict elbow or wrist motion may be helpful.
- Speech-language therapy. Speech-language therapy can help improve a child's life by teaching nonverbal ways of communicating and helping with social interaction.
- Nutritional support. Proper nutrition is extremely important for normal growth and for improved mental and social abilities. A high-calorie, well-balanced diet may be recommended. Feeding strategies to prevent choking or vomiting are important. Some children and adults may need to be fed through a tube placed directly into the stomach (gastrostomy).
- Behavioral intervention. Practicing and developing good sleep habits may be helpful for sleep disturbances.
- Support services. Academic, social and job training services may help with integration into school, work and social activities. Special adaptations may make participation possible.
- Rett syndrome fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/rett/detail_rett.htm. Accessed Aug. 3, 2015.
- Rett syndrome. National Organization for Rare Diseases. https://rarediseases.org/rare-diseases/rett-syndrome/. Accessed Aug. 3, 2015.
- Rett syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/rett-syndrome. Accessed Aug. 3, 2015.
- Schultz RJ, et al. Rett syndrome. http://www.uptodate.com/home. Accessed Aug. 3, 2015.
- Lotan M. Alternative therapeutic intervention for individuals with Rett syndrome. The Scientific World Journal. 2007;29:698.
- Rett syndrome: Condition information. Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/rett/conditioninfo/Pages/default.aspx. Accessed Aug. 5, 2015.
- Symons FJ, et al. Parent-reported pain in Rett syndrome. Clinical Journal of Pain. 2013;29:744.
- Byiers BJ, et al. Seizures and pain uncertainty associated with parenting stress and Rett syndrome. Journal of Child Neurology. 2014;29:526.
- Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 17, 2015.
- Tervo RC (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 28, 2015.