Epilepsy worry

[Julia2132009]

I just read something about the link between epilepsy and autism, which I hadn’t heard of before - about how autistic people are more likely to have epilepsy. Now I am really worried about something that happened in November 2012.

I was playing with my DS (ASD, currently 5, then 3]. Suddenly, for no apparent reason, he went quiet, his eyes rolled to the side and he became completely unresponsive and fell into my arms. His eyes were open but he was unconscious. This lasted for about a minute and a half. I panicked when he wouldn’t wake up and called an ambulance. By the time they came he was awake but they said they would check him out at the hospital. We were there for ages and they asked loads of questions, but eventually concluded he has just fainted and there was nothing to worry about. The general consensus was I had panicked and made a huge fuss over a little faint. But now I am really worried it was an epileptic seizure.

He wasn’t diagnosed then and I knew nothing about the link between autism and epilepsy. They seemed to rule out epilepsy at the hospital because he wasn’t stiff or shaking and didn’t pass water, but I’ve been reading about different types of seizure. Maybe I am just worrying over nothing again?

Hi Julia

As far as I can tell now a 24 EEG is standard test done on kids with Autism. I am not surprised we dont get it in UK. Have a read of this when possible.

Thanks
SA

As far as I can tell now a 24 EEG is standard test done on kids with Autism in the US

If he hasnt had anything in the last 2 years then I wouldnt worry too much, though its a good thing to keep in mind.

Epilepsy is diagnosed on an EEG and on medical history or symptoms. It is rarely medicated unless there is an abnormal EEG or a run of siezures. Often if someone is siezure free on medication for 2 years they trial coming off medication.

Have a word with your GP about the incident and see what they suggest.

Hi Julia
I've been looking into this, as my DS has an ASD and looks like he is developing epilepsy. I've just been onto the National Autism Society website where they say, unhelpfully, "the link between Autism and Epilepsy is poorly understood".

It seems to me to a bit chicken-and-egg. Epilepsy in my DS may be a manifestation of the neurological difference that we see as Autism, or it may be something else. Some kinds of ASD behaviour can be similar to Absence seizures, or as in the link, some seizures may be dismissed as stims. My doctor told me, by the way, that everyone is allowed one seizure, before you need to start considering epilepsy.

Interesting link too, thanks for that.

Thanks everyone, and thanks for the link salondon. I am reassured about the one seizure rule. There has been nothing like the incident where we went to hospital since, but there certainly could have been lots of little absence seizures - staring spells, periods of unresponsiveness - although that may be autism as I have assumed until now.

Ds (HFA) developed epilepsy, it developed gradually, every month since he had his first seizure, his are complex partial though. I would look into absent seizure, have you seen any on you tube.

My DS wasn't dx until he had 4 tonic clinic seizures. I thought after 2 it was obvious there was a problem but apparently its quite normal to take the wait and see approach. Even though birth father is epileptic!

I hope in your case its not epilepsy, but if it is and you need to chat about it feel free to give me a shout x

My DS has also had 'seizures'. One exactly as you described when he was 4. He is being assessed for autism.

They do wait - as in they don't always believe it's seizure unless they see it themselves.

I actually told GP last one he had it was focal with myoclonic jerks and thought it was febrile (but couldn't be according to 111 as he s 9). But he had tonsillitis so they blamed that and the complete lack of consciousness after on that as well.

If it's just been the 1 I shouldn't worry ATM but do watch him if he has more and film any episodes if you can.

Btw I've seen hundreds of seizures and I think sometimes by calm reaction to them does not help - I wonder if it happens again if I rang 999 in a panic they would take me more seriously!

After the last one he had I did a thread here as he had weeks of funny visions etc - everyone started asking if I'd considered epilepsy. (I didn't mention suspected seizure when Ill)

Bleeding circle!

Goodness sami, that does seem obvious. That's so kind of you to offer to chat, thank you. I looked at absence seizures on youtube and it is possible he has been having those.

Yesterday he asked for some pudding, so I said I would go and see what we had. Then I offered him choices and asked what he would like but he didn't respond. He was just sitting there looking all around the room in a day dream. I repeated myself about three times but he didn't respond at all for probably about half a minute. Eventually he snapped out of it and I had to repeat myself again as he hadn't taken in what I'd said at all.

He often does this sort of thing and I have just put it down to him being off in his own little world, part of his ASD. Maybe it was an absence seizure though. However, his eyes were wide open and the children on youtube mostly had more sleepy-looking half-closed or flickering eyes - so I'm just not sure.

hmm I guess its hard to tell when they have ASD too, but if your concerned I would say definitely press the issue with the doctor, don't let them sweep you under the rug! x