Any experience of seizure in autistic pre-teen?

[confusedofengland]

DS2 is 12 & has autism & ADHD, moderately I would say - he is thriving in MS school with a lot of support.

This morning, before breakfast he scared the life out of us by having a seizure! Lost control of everything for a few minutes. Couldn't sit up, speak, eat, walk, talk, focus. It lasted around 4 mins with another 10 or so until he could walk properly & his speech was no longer slurred. He is now totally back to normal.

We took him to hospital & got him checked out. They said it might be a one-off or might happen again, in which case he will need tests in his brain etc.

I asked if there is a possible link to autism & they said there are studies going on but not anything concrete as yet.

I was so scared & it worries me that there was no trigger we could notice, so nothing we can avoid per se. He is going on a residential with school in a fortnight, to France & I am scared it might happen there.

Does anybody have any experience or advice please?

Hi, my DD is also autistic and was diagnosed with epilepsy aged 15. She had her first tonic clonic aged 9, like you we were told it may be a one off so no tests required. She didnt have any further seizures until aged 15 when she was averaging around 6-7 per day until the right meds were found.

She underwent various EEGs and MRIs and it was a very scary time. Everything came back clear however, and all her doctors stated that there was a definite link between autism and epilepsy. They even checked back over all her health records and said that the febrile convulsions she had as a baby were probably seizures as she didnt have a very high temp with them.

I remember how scary it was starting down this road, but there is a lot of help out there. I think the hardest part for us was after her seizure when she was 9, as there was no explanation other than 'wait and see'. Sending love to you all!

I forgot to say, the epilepsy foundation has a great website, with sensible precautions that can be taken without being too restrictive

That does sound really scary!

The uncertainty is the worst bit, in a way. If we knew for definite it was something, we could medicate/manage/treat it.

In my position, would you still send him away with school? I have spoken to them briefly & they seem happy to take him & DH says we should just carry on as normal. But I'm so worried about what if something happens?!

Yes DS is autistic and has a diagnosis of epilepsy. I am a little unsure why the hospital made reference to a tenuous unproven link for you. DS specialist told us there is significant overlap between epilepsy and autism. DS has been off all medication for the last few years and has been completely seizure free. It is almost off our radar but we have been told that he will continue to have the epilepsy diagnosis. But we will see what the future brings I guess.

In my position, would you still send him away with school? I have spoken to them briefly & they seem happy to take him & DH says we should just carry on as normal. But I'm so worried about what if something happens?!

Is he going to see a specialist? Is he going to have an eeg and an MRI? I would wait until you get some more information before sending him on a trip. DH and I headed away for a couple of days when DS was young I worried so much that it ruined the trip. It wasn’t worth the stress.

My Dd does not have autism but has recently had 2 seizures and we are on a pathway to be assessed for epilepsy.
We don’t know why this has suddenly happened.
I’m surprised you haven’t been referred to a paediatrician. We were after just one episode. I would contact your gp and ask for a referral.
I would let him go on the trip. You could be waiting weeks or months before you know anything else.It may never happen again. Keeping it as normal as possible is how I see it. School must be informed.
My DD is also due to go to france for the weekend with school in a few weeks. She’ll be going. I am anxious. But I can’t allow that to stop her.

We waited 3 months for an appointment.
2 more weeks on and still no more appointments for the tests she needs.

He is not going to see a specialist unless it happens again. It was me who asked if there could be a link with his autism & the doctor (next one down from consultant, I believe) said about the studies being carried out so can't really comment yet.

School have been informed & are going to make sure his 1-1 is present with him for the rest of today, at the very least. They also want to have a in-depth conversation about the trip, but have told me already he will have a member of the SEN team with him & that staff are first aid trained. We very much carry on as normal with illness, taking time out only when needed & he responds well to this. He has been asking to go to school this afternoon, for example.

Will your travel insurance cover further seizures happening in the trip, if he unfortunately did have another?

That is a very good point about travel insurance. I don't know & will have to check it out. I assume the school has something in place that covers the whole group, and he does have his own GHIC card, but beyond that I don't actually know.

One of the questions for travel insurance is "are you waiting for any scans" I think. As the doctors are saying they won't investigate until 2 seizures (which is common as far as I can see), I assume you can still get cover, but I would definitely check with them/the school to make sure.

I hope I didn't frighten you with my experience! It was a tough couple of years not going to lie, but that was mainly because it took a while to find the right meds. There was a long gap between the first full known seizure and the second, and fortunately things have really settled down over the past couple of years.

I would say, if school are ok with him going away with them, and insurance is covered, then let him go - with the obvious precautions of no baths, so swimming unaccompanied and keeping hydrated (a trigger for DD so just thought I would mention it!)

Yes, we're definitely not waiting any scans atm. As far as we're concerned, he is not currently receiving or awaiting any treatment unless something else happens.

It is good to hear stories, thank you, to have an idea of what can happen. I'm glad yours has worked out well.

The swimming thing made me think. He was due to have swimming lesson straight after school today. DH said he should just go as normal, I said I wasn't comfortable with it & didn't think the pool would be less than 12 hours after a seizure. But I don't know if I'm overreacting. His next lesson is due in a fortnight (due to Bank Holiday), so I will email the course leader in between times to see what she says. Tbh, he is only 5% away from completing lessons to a satisfactory level for us, so if it comes to it, we can just stop them. I assume I can still take him swimming if I'm in the water with him?

He is now 100% himself, chatty & bubbly & gorgeous. But I'm worrying about what he can & can't do. For example, he loves to go on his switch/tablet, usually 1 hour per night. Should I allow this? Also we love theme parks & have passes, he is a sensory seeker so loves rollercoasters. Is this safe for him now? I'm completely thrown by this.

Hi op this caught my interest as ds is autistic and used to have febrile seizures as a toddler. Sorry your ds had a seizure it must have been so scary. I hope he is feeling better and he doesn't go on to have more.

Really worried now there a link between autism and epilepsy?? First I've heard of it !

Hi davegrohll I'm sorry to have worried you! I hope your DS continues not to have any further seizures. It may be worth talking to your doctor about it?

@confusedofengland When DD went swimming it was usually with her younger sister, who even at the age of 6 would happily stroll up to a lifeguard to announce her sister had epilepsy and that could they keep an eye on her (I am disabled so couldnt go in the pool so would watch from the gallery). Take your lead from the instructor re lessons, I am sure they will have come up against this previously.

Theme parks still scare the life out of me. Prior to her epilepsy diagnosis DD was a huge thrill seeker and would go on almost any ride. When she was diagnosed her consultant said she had to be seizure free for 12 month before he considered her safe to go back on them. It took a long time for that to happen, and now that she is older she is more aware of the rides that are potential triggers for her (more so at night as the lights bother her - she isn't photosensitive though).

I know it's very easy to say, but truly - your son's seizure could be a one off so try not to worry too much. And even if it isn't, there may be a long gap until the next one. My DD;s consultant used to say to me "you can't put her life on hold, you can just do all you can to minimise the risks". I think I probably got the balance wrong when we first started out on this journey as I went in to full protective mode, but things did get easier.

Well, fingers crossed, DS seems totally back to normal last night & this morning. He is on really top form. Asking lots of questions about seizures in general- it can take him a while to get his head round things.

I am still a bit of a wreck, but trying to have a word with myself! Just carrying on as normal, but keeping more of a close eye on him & questioning everything. I don't know if a recurrence is more likely to happen within the following few days, but I guess it's just still fresh in my mind so I'm acting accordingly.

I have epilepsy and work with autistic adults. There is a pretty well established link between autism and epilepsy I am not sure why you were told otherwise. BUT one off seizures are also so very common. I think over our lifetimes about 50% of us will have at least one seizure. Epilepsy is the tendency to have seizures so by definition means more than one seizure which is why one seizure alone doesn't need investigation. It may never happen again.

Since seizures and seizure type events are common it's one of the things lifeguards are particularly trained to spot. I've been swimming for years including taking all three of mine swimming as babies. Always told the lifeguards. It's always been fine. I did once have a seizure in the pool, another swimmer spotted me bobbing to the surface and grabbed. I don't know what happened obviously but I was fine, didn't even inhale water. Had to recover besides the pool and the pool was cleared because the alarm went off. But I have no memory of it.

Photo sensitive epilepsy is rare so no need to worry about screens as actually triggering seizures. Nor will roller coasters. However, fatigue and stress are common triggers. IF your son developed epilepsy (i.e. kept having seizures) I wouldn't worry about theme parks, but you might want to just manage exertion, not have super long hot days out that kind of thing.

IF it is epilepsy it's also quite common for teens to have seizures and become seizure free on adulthood or for the pattern to change dramatically as hormones change. So it's not definitely a lifetime diagnosis.

If it was me I would let him go on the school trip. Worst case scenario is it happens in France which has excellent hospitals and where he might get an eeg a bit quicker than England. But he is your son and you know best how you and he would feel about that. I really hope it was a one off though.

The rate of epilepsy is higher in teenage autistics then in the general population and it rises within that group in the teenage years from 13% to 26% of autistic people.

Thank you. This is all really useful information. My head is just buzzing with it all & I'm not sure if I'm overreacting. It just scared me so much & I'm a worrier at the best of times.

I've been thinking ahead, too (meeting trouble halfway perhaps)! He does Scouts & they always do kayaking & crate stacking or archery/axe throwing. My youngest, a Cub, is doing it tonight. For these, would you just let the Scout leader know? Stay with him? Not let him attend these evenings? I would definitely inform anybody involved, but I don't know what else.

Sorry for all the questions, my head is just buzzing. I already feel somehow responsible for his struggles in life & I desperately don't want to let him down further.

Yes there is a correlation. Dd has had blackouts since toddlerhood which stopped around puberty. She still has mild absence seizures and can't drive.

The only activity I wd take note of there is kayaking. Instructors need to know if he looks vacant or had a seizure as rescuing protocols wd be different. They need to get him to the bank asap. And it's possible white water or playboats with uncontrolled epilepsy aren't a great idea. Unlike the swimming scenario that does rely on the paddler being able to get themselves upright or out if they go under so sudden loss of consciousness CD be a problem. Ask a qualified instructor though, they may have dealt with it before and have ideas for managing risk. And padding in sit on tops or Canadian canoes shd be fine.

With archery or axe throwing he's not going to shoot an arrow or throw an axe during a seizure. Trust me when you start having a seizure you can't do coordinated stuff like that. He might drop stuff. If instructed properly he should only ever direct a loaded bow towards a target so there's the remotest possibility he could lose awareness at precisely that point and miss the target but no one should be standing there.

Crate stacking again he might drop stuff.

The majority of people with epilepsy get some premonitory symptoms unless they are having myoclonic jerks or atonic seizures. So he's unlikely to climb to the top of a human pyramid just before a tonic clonic seizure.

You being there won't stop it happening.

You are being really wise to risk assess everything and I don't want to minimize the risks. IF it is epilepsy it is a massive ball ache and young people are often terrible at managing the risks. But meds can help and most of us lead mostly normal lives as adults. I don't love it and would rather not have it but it's manageable.

And you aren't responsible. Again even if it's epilepsy in most cases the cause is unknown - which means there will be some structural difference in the brain but we don't know why this happens to some people and not others. Indirectly you are responsible because you are his parent but only in the sense you rolled a billion sided dice and this is what came up along with all the amazing things about him too.

Update: I've just collected DS from school following another, more minor seizure. He is pretty much OK but confused & a bit upset, keeps asking if we think he's doing it on purpose.

As gutted as I am, at least now they will have to look into it all.

It makes all the future stuff more unlikely, I guess & more irrelevant.

Oh bless him. Have you taken him to hospital/GP?

The whole feeling of having a seizure is so disorientating I am not surprised he feels discombobulated. He may also feel at some level he should be able to stop it. Even after decades of seizures part of me can't quite accept they just happen to me and I can't stop them. If you can just let him talk about it and be there for him, don't over-reassure or over-explain. Just after a seizure we can feel a bit fragile and just need space and a bit of sleep.

The next step is going to be a referral to a seizure clinic which may take a few weeks to come through. If at all possible if he has another try and video it (make sure he's safe first!). It will really help the doctors who see him.

The whole assessment process can create a bit of turmoil and you will find it upsetting and it can take a while to get meds that work. BUT please rest assured he will be able to do all the things he loves again soon. Thinking of you and wishing you all the best.

Oh Jesus I’m so sorry. Straight to A and E. I personally would push for MRI to check for any structures on brain and EKG (I always mix this one up with the ECG and EEG so check that one out). Also push to see a neurologist.

My daughter who is autistic, started having seizures when she was 10 all of sudden . So far we have EEG and have a cardiology appointment, and is taking anti seizure medication.