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. To better cope with the challenge:
Oct. 04, 2012
- Find ways to relieve stress. It's natural to feel overwhelmed at times. Talk about your problems with a trusted friend or family member to help relieve your stress. Take some time for yourself doing something you like to recharge your battery.
- Arrange for outside help. If you care for your child at home, seek the help of outside caregivers who can give you a break from time to time. Or you may consider residential care at some point, especially when your child becomes an adult.
- Connect with others. Getting to know other families facing problems similar to yours can help you feel less alone. Look for online support and information from organizations such as the International Rett Syndrome Foundation.
- Schultz RJ, et al. Rett syndrome. http://www.uptodate.com/index. Accessed Aug. 27, 2012.
- Smeets EE, et al. Rett syndrome. Molecular Syndromology. 2012;2:113.
- Rett syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/rett-syndrome. Accessed Aug. 27, 2012.
- Disorders usually first diagnosed in infancy, childhood or adolescence. In: Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR. 4th ed. Arlington, Va.: American Psychiatric Association; 2000. http://www.psychiatryonline.com. Accessed Aug. 28, 2012.
- Rett syndrome fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/rett/detail_rett.htm. Accessed Sept. 11, 2012.
- Neul JL, et al. Rett syndrome: Revised diagnostic criteria and nomenclature. Annals of Neurology. 2010;68:944.
- Lotan M. Alternative therapeutic intervention for individuals with Rett syndrome. The Scientific World Journal. 2007;29:698.
- Percy AK. Rett syndrome: Exploring the autism link. Archives of Neurology. 2011;68:985.
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