Autism and Epilepsy?

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Is there a link? My DD(15) was dx with autism last year after a very long fight. She had one major seizure 6 years ago, but as they thought it was a one off, there were no investigations. She has now had two major seizures in three weeks (first one while crossing a road and did a lot of damge, while only just being missed by an oncoming car...), the second today while at school.

I am absolutely beside myself with worry. The doc today said she was to have a brain scan as a matter of urgency to check for 'something funny', while the EEG tests etc would be as a matter of course.

A couple of people have suggested a link between autism and epilepsy, so I was hoping if I posted here someone would have some knowledge on that - as I am too scared to google.

Also, if anyone could tell me how to not now wrap her in cotton wool, that would be good. I have a long list of what she's not allowed to do (bath can only be so deep etc) and to be honest, I am frightened of over-reacting here and stopping her from continuining to develop the little bit of independence she was only just finding.

A little bit of hand holding would also be very very welcome right about now

Leonie - your comment re something about Mary made me smile this morning, that's exactly what she looked like! And thanks for sharing your personal experiences, I don't know anyone in real life with epilepsy - you to Couthy

Leonie, I can't figure out if I want it to show something or not. Answers would be good, as the alternative is too hard to think about, but the prospect of epilepsy is also quite scary.

Results are finally back. Eeg showed lots of activity so they starting her on medication today.

I'm completely overwhelmed, have loads of questions but not sure who to ask them to. Doc said epilepsy nurse would be in touch but what do we do in the meantime. Being discharged today.

All DD is concerned about is whether she can still trampoline!

What meds are they thinking of? It will be an adjustment to start with, but it can be managed. I have 4 DC's and severe epilepsy! I do trampoline, but I've stopped swimming. It's the one thing I DO really miss.

Hi Couthy DD was discharged late Friday night, starting with Keppra on Sat morning. Low dose for 1 week, gradually increased each week for a few weeks I think. Doc has said no trampolining until results of MRI are back.

The EEG results were explained in a bit more depth to me, so I think I understand it a bit more. DD has features of both focal and generalised epilepsy, which according to her doc is quite unusual (she said focal usually progresses into generalised). They had a chat with specialist at another hospital who has said she wants sleep EEG, sleep deprived EEG and MRI. I am trying not to panic here, although I did ask the doc outright if they were looking for a tumour. Its a possibility.

DD hasnt been swimming for a while, but I know she has wanted to get back to it - I guess we will have to do some figuring out. I know its not the end of the world or anything - its just very scary trying to sort everything out whilst not panicking too much about possible future results.

Anyway... DD back to school for a few hours today

I'm sure she will be fine. And if she has a seizure, the school will call you. They will look after her.

If she can pick up on the warning signs and get into a safe place / position, it will help to prevent injuries.

I doubt the trampolining thing will be permanent - they just want to check everything out thoroughly first.

Once all is sorted, I'm sure she can go back to trampolining.

Swimming will be a bit more difficult, admittedly. Maybe with an adult alongside her at all times. Not what you wang as a teen trying to become more independent though.

Just remember - 70% of people with epilepsy gain FULL control of their seizures with medication, and another 15% gain moderate control. That's 85% of people with epilepsy that can get back to a near normal life.

Are there LSA's in the classroom? If so, I'm sure they would have been told.

Thanks Couthy, your kind words have brought tears to my eyes again

Yes, trampolining ban is only short term but its going to be quite hard for her to watch DD2 bouncing while she isnt allowed.

Medical team at school are on full alert, its just a bit worrying as the epilepsy nurse in on leave until next week, so the care plan she told me about wont happen until then. It seemed a bit unplanned this morning when I took her in - but fingers crossed it will be ok. As they said, DD isnt the first child they have looked after with epilepsy. Yes, said I, but she is the first one that I have looked after She has quite a fair bit of support at school already due to ASD, and knows she can go to the support base if she needs to.

DD and I had quite a talk this morning about the need to record anything unusual. This was after DD2(6) informed me that DD had felt faint this morning and had to sit down (her warning sign of a seizure) - I got quite annoyed that DD hadnt told me. I just dont think she understands just how much this can impact on her - and it is only by recording and recognising the signs that we can try and prevent it impacting too much (thats what the epilepsy nurse told me to say to her).

She could be in denial. I was. For two years...

I tried to 'forget' I had epilepsy. Ignoring my signs, trying to act like I did before etc.

It's normal though.

YOU as a Carer may have to face up to the realities instantly, but she may well be heavily in denial. Not an easy situation!

Epilepsy Action helped me at that point, to come to terms with my dx, and to learn to accept it and the changes that brought to my life.