Does anyone know anything about Tuberous Sclerosis?

[kando]

Just found out that dd1 (5) has a defective gene which causes Tuberous Sclerosis. She has other symptoms too - epilepsy (absence seizures - controlled by medication, but this was the catalyst to further tests), patches on her skin and on her brain. In all other aspects of her development she's great - very bright and eager to learn. However, when I asked the genetic doctor if dd might get worse as she gets older, he said he couldn't say as he couldn't predict the future (we live in Holland where people are very forthright!). I'm now worrying that although dd1 is great at the moment, later on things could all go wrong. There are so many variances of the condition and I've looked it up on the net, but can't find anything which discusses any progression of the condition. Does anyone have any experience of TS they might be able to share with me? DH and I now have to be tested to see if either of us has the condition.

kando, I'm sorry to hear you've just had this worrying diagnosis for your dd.
I know very little about Tuberous Sclerosis, but as you have been told that its progression can possibly lead to a learning disability, I think you might also want to post in our Special Needs board in case anyone can assist from that angle.

Best of luck

Thanks Marina - will try that.

all i know, is that it can sometimes autism like symptoms. but for others they carry on as they are. i think its one of those condition which doesnt follow a particular path.

i know there was a young boy on the 'born to be special' programmes who has TS, he was called William, and was very severe with his epilepsy.

Seeing those documentaries is the only knowledge I have of TS too misdee.
Have you managed to find the SN board yet Kando as changes to site structure mean you have to actively seek it out IYSWIM

I have, thanks Marina - I just copied and pasted the OP here. I feel a bit kind of useless to be honest, I want to ring up dd's consultant from last year when we were back in the UK and ask her some questions (dd will go back under her care when we get back to the UK). The diagnosis hasn't really come as a shock, as it was mentioned before we left the UK, and it was under her former consultant's guidance that we asked for all the tests when we got out here.

But now that it's definately TS, I want to be able to get myself prepared for anything which may happen in the future. I've also got 2 other dds and now have to watch out for sypmtoms in them (cue paranoid mother!!). I suppose I should take it one step at a time, and the websites I've looked at are very helpful. At the moment dd1 is a lovely, beautiful, bright girl (if a little lippy at times ) and I suppose my fear is that that little girl may be taken away from me by something outwith my control and that I know very little about. Thanks for taking the time to listen to my ramblings.