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Coping and support
By Mayo Clinic staffIf your child has been 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 mainstream than you may have expected.
For parents, the behavior issues that can accompany tuberous sclerosis may be the most challenging. Common problems such as raging outbursts, aggression, repetitive behaviors, or social and emotional withdrawal can be extremely hard to cope with. Remember that the behavior is not your fault — and it's not your child's fault, either. Let your child's doctor know if these problems develop. The earlier you and your child get help learning skills to manage these problems, the more likely your child is to do well in the long term.
Your love and support are essential to helping your child reach his or her full potential. Learn all you can about tuberous sclerosis, and work closely with your child's doctor to establish a frequent screening schedule for health and developmental problems. Discovering and treating problems early will maximize your child's chances of a good outcome.
You may also 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.
- Tuberous sclerosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm. Accessed Oct. 4, 2011.
- Seibert D, et al. Recognition of tuberous sclerosis in adult women: Delayed presentation with life-threatening consequences. Annals of Internal Medicine. 2011;154:806.
- Tuberous sclerosis complex. http://www.uptodate.com/home/index.html. Accessed Oct. 5, 2011.
- My child has tuberous sclerosis: A brochure for parents. Tuberous Sclerosis Alliance. http://www.tsalliance.org/publications/52810_NTSA.pdf. Accessed Oct. 4, 2011.
- Tuberous sclerosis complex. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/tuberous-sclerosis-complex. Accessed Oct. 4, 2011.
- DeKlotz CMC, et al. Dramatic improvement of facial angiofibromas in tuberous sclerosis with topical rapamycin: Optimizing a treatment protocol. Archives of Dermatology. 2011;147:1116.
- Patterson MC (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 8, 2011.
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