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What are the treatments for Rett syndrome?

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Most people with Rett syndrome benefit from well-designed interventions no matter what their age, but the earlier that treatment begins, the better. With therapy and assistance, people with Rett syndrome can participate in school and community activities.1

These treatments, forms of assistance, and options for medication generally aim to slow the loss of abilities, improve or preserve movement, and encourage communication and social contact. A list of treatment options is presented below; the need for these treatments depends on the severity of different symptoms.2,3,4,5

Physical Therapy/Hydrotherapy

  • Improves or maintains mobility and balance
  • Reduces misshapen back and limbs
  • Provides weight-bearing training for patients with scoliosis (an abnormal curvature of the spine)6

Occupational Therapy

  • Improves or maintains use of hands
  • Reduces stereotypic hand movements such as wringing, washing (a movement that resembles washing the hands), clapping, rubbing, or tapping
  • Teaches self-directed activities like dressing and feeding

Speech-Language Therapy

  • Teaches nonverbal communication
  • Improves social interaction

Feeding Assistance

  • Supplements calcium and minerals to strengthen bones and slow scoliosis
  • High-calorie, high-fat diet to increase height and weight6
  • Insertion of a feeding tube if patients accidentally swallow their food into their lungs (aspiration [pronounced as-puh-REY-shuhn])6

Physical Assistance

  • Braces or surgery to correct scoliosis
  • Splints to adjust hand movements

Medication

  • To reduce breathing problems
  • To eliminate problems with abnormal heart rhythm
  • To relieve indigestion and constipation
  • To control seizures

  1. International Rett Syndrome Foundation. (2008). About Rett syndrome. Retrieved May 10, 2012, from http://www.rettsyndrome.org/understanding-rett-syndrome/about-rett-syndrome External Web Site Policy [top]
  2. PubMed Health. (2010). Rett syndrome. Retrieved June 23, 2012, from http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503 [top]
  3. United Cerebral Palsy. (2009). Can Rett syndrome be treated? Retrieved June 23, 2012, from http://www.mychildwithoutlimits.org/?page=rett-syndrome-treatment External Web Site Policy [top]
  4. Medscape Reference: Drugs, Diseases, and Procedures. (2012). Rett syndrome treatment and management. Retrieved June 23, 2012, from http://emedicine.medscape.com/article/916377-treatment#showall External Web Site Policy [top]
  5. Shah, P. E., Dalton, R., & Boris, N. W. (2007). Pervasive developmental disorders and childhood psychosis. Kliegman, R. M., Behrman, R. E., Jenson, H. B., & Stanton, B. F. (Eds.). Nelson textbook of pediatrics (18th ed.); chap. 29. Philadelphia, PA: Saunders Elsevier. [top]
  6. Medline Plus. (2012). Rett syndrome. Retrieved May 10, 2012, from http://www.nlm.nih.gov/medlineplus/ency/article/001536.htm [top]

Last Updated Date: 11/30/2012
Last Reviewed Date: 11/30/2012
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