having children

i am a mother of a 16 y/o with tuberous sclerosis diagnosed at age 10.  He had only 3 seizures which are well managed on trileptal.  He does very well in school usually an A,B student. should I be woried as he gets older he my develop problems that effect his learning abilities? He wants to become a doctor some day and have children of his own.

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

It is of course difficult to predict exactly what the course is that your son will take. However, in general, the complications that tuberous sclerosis patients suffer from, related to cognitive problems and other issues, depends on the severity of their disease. This relates to the number of tubers and other lesions they have, how difficult their seizures are to control, the non-neurologic complications they have, and so on. The cognitive problems that patients with tuberous sclerosis can have range from severe mental retardation, to mild learning disability or selective learning disability. However a large number of TS patients have absolutely no cognitive problems. Patients with mild disease have normal life expectancies. It sounds like your son is doing very well based on the description you provide above, and he has a good chance of being able to achieve academic grades and hopefully fulfill his career goals barring any complications of his illness. The important thing to keep in mind is that should he find himself struggling with a specific topic, it would be important for him to be assessed for this further so that he can get the necessary help to help him pull through a subject that might be difficult for him.

As I'm sure you know, tuberous sclerosis is a complex disease that may involve several organ systems including the brain, kidney, heart, and other organs, and it is recommended that your son be periodically evaluated at a center that has expertise in tuberous sclerosis (a tuberous sclerosis clinic) so that all the necessary testing can be done at the indicated time.

Many, many patients with tuberous sclerosis grow up to have family and have successful careers. However it is very important to remember that tuberous sclerosis is a genetic disorder, and prior to having children it would be important for your son to visit a genetic counselor.

An excellent resource for patients and their family members for information and support is the Tuberous Sclerosis Alliance. http://www.tsalliance.org/

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.