If your child is diagnosed with tuberous sclerosis, you and your family will face a number of challenges and uncertainties. One of the most difficult things about this condition is that it's impossible to predict how your child's health and development will unfold over time.
Your child may have only mild problems and track closely with his or her peers in terms of academic, social and physical abilities. Or your child may have more-serious health and developmental problems and lead a life that's less independent or different from what you may have expected.
To help you and your child cope, here's what you can do:
Nov. 25, 2014
- Establish a screening schedule. Learn all you can about tuberous sclerosis, and work closely with your child's doctor to establish an ongoing screening and monitoring schedule for health and developmental problems. Discovering and treating problems early will maximize your child's chances of a good outcome.
- Get help early for behavior problems. For parents, the behavior issues that may accompany tuberous sclerosis can be challenging. Remember that the behavior is not your fault — and it's not your child's fault either. Talk to your child's doctor if these problems develop, and work with your child's school to discuss education services. The earlier you and your child get help learning how to manage these problems, the more likely your child is to do well in the long term.
- Provide love and support. Your love and support are essential to helping your child reach his or her full potential.
- Connect with other families. You may find it helpful to connect with other families who are coping with tuberous sclerosis. Ask your child's health care team to recommend a support group in your area, or contact the Tuberous Sclerosis Association to find out about support.
- Babovic-Vuksanovic D (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 28, 2014.
- Tuberous sclerosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm. Accessed Sept. 23, 2014.
- Tuberous sclerosis complex. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/tuberous-sclerosis-complex. Accessed Sept. 23, 2014.
- Tuberous sclerosis. National Organization for Rare Disorders. https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/35/viewFullReport. Accessed Sept. 23, 2014.
- Owens J, et al. Tuberous sclerosis complex: Genetics, clinical features, and diagnosis. http://www.uptodate.com/home. Accessed Sept. 23, 2014.
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- Krueger DA, et al. Tuberous sclerosis complex surveillance and management: Recommendation of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatric Neurology. 2013;49:255.
- About TSA. Tuberous Sclerosis Alliance. http://www.tsalliance.org/. Accessed Sept. 30, 2014.
- Hand JL (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 4, 2014.