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Tuborous Sclerosis
Sun, 09/10/2006 - 05:32Topic: Living With Epilepsy - Youth
Does anyone have any expereince with a diagnosis of tuberous sclerosis? My daughter is 11 and currently takes 2500mg a day of Keprra and 700mg a day of Tegretol CR - and it seems to be working. She is still having the occasion simple partial and partial complex, but less often and they are not rolling on as long or moving to generalised seizures - that’s the good news.
The not so good news is that we went to a dermatologist last week. We were referred by our paediatrician & paediatric neurologist because of 'odd' mole looking spots on her scalp. Well, the scalp isn’t a problem but the dermatologist believes that a lesion on her back may be a shagreen patch - we have to have a biopsy in a few weeks to test to see if she actually has tuberous sclerosis, which may be the cause of her seizures. While I have really wanted a diagnosis of why she has commenced having seizures for the first time ever at 11, I don't want this diagnosis. She has no other symptoms, (no other skin conditions, no developmental delay or intellectual impact, no signs of renal tumours but her heart has never been checked) although she may have other skin symptoms when she was a baby but they weren’t picked up. We see the paediatric neurologist this week and will discuss more.
Does anyone else have any experience with this condition?
Re: Tuborous Sclerosis
Submitted by fzMousie on Sun, 2006-09-10 - 08:39
My sister has tuberous sclerosis. She was diagnosed when she was 29. It has not had an enormous impact on her overall wellbeing. It certain hasn't manifested itself in any developmental delays. Good luck. It's not a really terrible thing to have. More annoying than anything else. Don't expect it to impact her quality of life. I don't think it will. My sister's quality of life certainly hasn't been impacted.