Coping and support

If your child is diagnosed with tuberous sclerosis, you and your family may 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 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 is less independent or is different from what you may have expected.

To help you and your child cope, here's what you can do:

• 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 reduce complications.
• Get help early for behavioral problems. For parents, the behavioral 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. Talk to your child's doctor if problems develop, and work with the school or a mental health provider to discuss education and behavioral and mental health services. The earlier you and your child get help learning how to manage these problems, the more likely your child will 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. When needed, counseling with a mental health provider may help with adjustment and coping. Respite care services may provide helpful support for parents.
• 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 Alliance to find out about support.