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. And in one study, for example, seizures were linked to higher levels of stress for parents whose daughters have Rett syndrome.
To better cope with the challenge:
Sept. 17, 2015
- 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.
- 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.