Rett syndrome

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Coping and support

By Mayo Clinic staff

Children with Rett syndrome need help with most daily tasks, such as eating, walking and using the bathroom. This constant care can be exhausting and stressful for families. It's natural to feel overwhelmed at times. Talking about your problems can help relieve your feelings of stress. Arrange for outside help to ease your load.

Many families affected by Rett syndrome care for their children at home, often with the help of outside caregivers who can give parents a break. Other families choose residential care, especially when their children become adults.

Each family and each child with Rett syndrome is different. But connecting with other families facing the same problems can help you feel less alone. Online support and information are available from the International Rett Syndrome Association and other organizations.

References
  1. Shultz RJ, et al. Rett syndrome. http://www.uptodate.com/home/index.html. Accessed May 14, 2010.
  2. What is Rett syndrome? National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/upload/rett_syndrome_2006.pdf#page=6. Accessed May 14, 2010.
  3. Rett syndrome. Genetics Home Reference. U.S. National Library of Medicine. http://ghr.nlm.nih.gov/condition=rettsyndrome. Accessed May 14, 2010.
  4. Rett syndrome. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/health/topics/Rett_Syndrome.cfm?renderforprint=1. Accessed May 13, 2010.
  5. Chahrour M, et al. The story of Rett syndrome: From clinic to neurobiology. Neuron. 2007;56:422.
  6. Hagberg B, et al. An update on clinically applicable diagnostic criteria in Rett syndrome. European Journal of Pediatric Neurology. 2002;6:293.
  7. Rett's Disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR. 4th ed. Arlington, Va.: American Psychiatric Association; 2000. http://www.psychiatryonline.com. Accessed June 8, 2010.
  8. Lotan M, et al. Management of young children with Rett disorder in the controlled multi-sensory (Snoezelen) environment. Brain & Development 2005;27:S88.
  9. Alternative therapeutic intervention for individuals with Rett syndrome. The Scientific World Journal. 2007;29:698.
DS00716 June 18, 2010

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