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?

DH has taken him to A&E. They have been triaged & had 2 finger prick tests done. I wish I could be there with them! DH reasoned that he is less emotional & more likely to remember things, so I should stay home with the other DSes. That was very upsetting tbh.

I'm still wondering what this means for his school trip? Whether he can/should go? Seizures so far lasting a very short time & he gets back to somewhere near normal pretty quickly. But it is a huge unknown.

@confusedofengland big hugsxx.

The unknown is absolutely the worst. I think you can hold off making decisions until things are in a more predictable stage. To be honest within a couple of months of diagnosis of epilepsy for DS life rumbled on for us and within a short while it was all very normal again. This is the worst time but you will get there. Xxx

@confusedofengland sending hugs. As you say, at least there will be investigations - although my experience of those is that they are not quick.

I agree with pp, hold off making any decisions at the moment, just focus on the here and now and be guided by the doctors

I know it sounds obvious in a way, but a notebook is definitely a good idea to make notes, keep records etc. We use an epilepsy app (epilepsy journal - olly tree applications) as it we can keep details logs of seizures and show the neurologist. If further seizures do occur and you get the change, definitely video them as they are a great tool to show the medics.

Wishing you all well x

I do totally understand all that & agree with it. But equally, 2 weeks from today he is supposed to be going on a residential trip with school, which we have paid for & he is excited about. I doubt we will have answers by then & it would affect him for a long while not to go. Although obviously he won't go if he's not well enough.

I think all you can do is discuss with doctors and school, fingers crossed he still gets to go! I am not sure you will get to see a neurologist within these 2 weeks, so maybe encourage your DH to ask while at hospital?

Oh gosh that is so difficult what rubbish timing for you all. It is so hard to know yet.

DS was hospitalised for a week after his first seizure so a trip wouldn’t have been possible but then his was on a completely different scale to what you are describing.

I guess what I’m saying is that you just have to see what comes out of this. I think hope for the best and see what comes of it. They might give him medication to take during a seizure (buccolam) while he weaned onto anti convulsive medication if that is the route they go. But we were a while before all of that was settled.

My Ds is Autistic.
When he was 14
I got a call from School to say: 'he's having a Grand Mal seizure. Why didn't you tell us he was Epileptic?' I jumped in the car & when I got there (25 miles...) he was sitting up, looking dazed & frightened. He'd 'been 'out of it' for 40mins' they said (but they'd not called an ambulance....). It then happened a few more times.

Long story short, after eventual MRI & EKG tests at local Hosp it was decided it wasn't epilepsy but 'severe semi-volitional seizure-like activity'. Caused by stress.
2 Consultants said it was the worst they'd ever seen. It was frightening & painful for him as he often hit his head / arms on the way down. He's now 18.
It is now more severe spasms than 'seizures'. It's not deliberate at all but can be reduced by quietly talking to him, reassuring him that he is safe, it's okay etc.

I hope you get to the bottom of what's going on for your son. Sending love x

@medianewbie that sounds awful! Did you work out what the stress is/was?

For DS, there appear to be no triggers. The 2 seizures have happened at different times of day. One before breakfast, one after lunch. Neither time involved loud noise or flashing lights. He's not had a temperature & has been 100% normal right before. He does have a very slight lingering cough which I mentioned yesterday & they said nothing more of. He has also both times said his throat is sore, but I put that down to making funny noises & drooling (leading to a dry mouth). He is very skinny (1st percentile for weight), but always has been & so has his dad. I really can't see any trigger or explanation, which is scary.

Autistic DGS had a massive seizure a few years ago. Witnessed by many people as in public. Nothing since.

He has had fingerprick tests, for blood sugar. Now having eeg then blood tests. He is scared of blood tests as when he had one done during Covid, they refused to use numbing cream & had to grip his arm so tight it left a hand print & caused raised CK levels, which we had to have checked at GOSH.

@confusedofengland It was Anxiety. He has a dx of Clinical Anxiety as well as ASD: when he is anxious, tired, run down is when he is most vulnerable.
I think thats the case for actual Epilepsy too but I may be wrong in that. One thing he said is that he got stressed when he knew it was going to happen. He described a 'tipping point' by which he knew he 'couldn't stop it' however hard he tried. He said he also felt stressed because he knew 'the adults around me woluldn't cope'. His so-called School sent him home for a month 'in case he fell downstairs'. He was upset at the 'semi-volitional' label. He felt that meant he was 'putting it on'. He almost hoped it was Epilepsy as then there 'would have been a tablet to take it away'. In the end I just talked to him about it all. If your son turns out not to have Epilepsy but 'stress seizures' then there is a good US book we got. I'll try to look it up. It was low key & had helpful suggestions. Good luck x

Just to give an update.

Everything went fine at hospital. We were there about 7 hours until 10pm or so. Nothing of concern apart from the seizures. The one the school described seeing & the one we saw were very different so paediatric consultant was puzzled.

Kept him home from school yesterday due to late night previous night. He was absolutely fine all day & night, in fact very cheery & listening really well, which he often doesn't. Did refer to seizures a lot, trying to process it.

School rang to ask how he was, which is nice. Asked if he was still hopeful about going on the residential. The doctor said up to us but she thinks fine if no more seizures in interim period. Will have to look at insurance, I think.

The whole thing has really knocked me for six, massively. I keep bursting into tears for no reason & I'm so tired & sleeping a lot. It's made me question every little thing I do or don't do. Also just emphasised DS's differences & struggles. I'm trying not to be like this & DH says I mustn't & it's not helpful, which I know, but I can't help it. But I know I need to carry on, not just for DS2 but for my other boys, too. So much going on right now I can't afford to drop any ball.

There is a massive link between autism and epilepsy, especially around puberty. I was told this by my sons neurologist. My son is doing very well on epilim.

https://www.nice.org.uk/guidance/ng217/chapter/1-Diagnosis-and-assessment-of-epilepsy#referral-after-a-first-seizure-or-remission-and-assessing-risk-of-a-second-seizure
have a look through the nice guidelines which sets out the protocols and tests required for children presenting with seizures. He should have been referred to the 1st for clinic with a paediatrician I see he’s had a further episode. Hopefully this will help you navigate the next steps

Teen DD, AuDHD with learning disabilities has seizures. We're currently going for the next step after the first EEG which was normal and waiting for genetic testing, referred by Paed during ASD diagnostic appt.

My sis ADHD also has seizures. I don't know if epileptic or not.

Oh, that's interesting. We were very much told after the first seizure just to watch & wait, it may happen again but equally some children never have another.

He has now been referred for EEG, which they think should take place within about 4 weeks.

We were told the same when she had her first seizure but she's had more now as well as other issues, so paeds (we're under both community paediatrician and general paed, as well as paediatric neurologist, etc) thought it would be good to do some further testing beyond EEG, since some of her conditions seem to run in the family.

10% of autistics have epilepsy also

https://journals.sagepub.com/doi/10.1177/13623613211045029?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

The whole thing has really knocked me for six, massively. I keep bursting into tears for no reason & I'm so tired & sleeping a lot. It's made me question every little thing I do or don't do. Also just emphasised DS's differences & struggles. I'm trying not to be like this & DH says I mustn't & it's not helpful, which I know, but I can't help it. But I know I need to carry on, not just for DS2 but for my other boys, too. So much going on right now I can't afford to drop any ball.

awww @confusedofengland that is exactly how I felt when DS was diagnosed with epilepsy. It is such a huge shock for you it is completely understandable. Mind yourself

I have really struggled after both of her seizures and currently live in fear of another one.
It’s totally normal to feel like this. It’s a pretty traumatic experience to watch somebody you love so much going through this. I thought she was dying the first time it happened.
It took me about a month to feel stable again. It’s taken me less time to feel normal again the second time around. I’ve had to start coming to terms with the fact that this may be our new normal for a while.
It breaks my heart if I think about it too much. I’m worried what it means for her future.
I haven’t cried yet, I wish I could in a way. It might take away some of the hideous anxiety.

That is really rubbish for you, Smartie Pants. It is so hard. Cry if you need to.

DS was doing so well. Completely clear since Tuesday lunchtime & happier than ever. Then today he has had another one, very small.

With DH at live Premier league football match. Went very quiet, eyes went to one side, then head, made funny noise & was shaking a bit, then was sick. Over in one minute. DH took him out to recover, he wanted to go back in within 10 minutes, up & cheering a goal after a minute at their seats.

I was so desperately hoping he wouldn't have any more, each day gave me more hope. But it was not to be.

Now I'm thinking the school trip is definitely off. Gutted for him. And now back to being on edge when I had started to relax.

He was late getting to sleep last night as sharing a room at PIL & awake early this morning, so I wonder if tiredness plays a part. DH doesn't think so but who knows.

Gutted. And scared again.

Tiredness is definitely a factor.
Who has referred him? Do you have a consultant? I’d defame sure that they know he’s had another one. It might speed things up a bit.
Have you read around a bit. Tiredness, illness, hormones and stress can all affect it.
Certain medications are not recommended as they lower seizure thresholds. Decongestants, anti-emetics and some hayfever medications. Our consultant said hayfever medicines was fine in her case. Decongestants and caffeine were a no.
Is he having tonic-clonic seizures as they sound a bit different to my Dds.

He doesn't take any medication other than his ADHD meds, which they okayed at hospital.

The consultant paediatrician who we saw in children's ward after the second time referred him for EEG. We have an email address so will email & describe this one.

I'm not sure if they are tonic-clinic tbh. These second two have been different to the first. He lost awareness the first time around (not consciousness) but not other two times.

I have read around but there is a lot of conflicting information, it's difficult. Also, all of his seizures so far have been at different times, different circumstances with no common trigger that we could see.

Trying to have a word with myself about what he's going to miss out on. Clearly his health is top priority. But he already is so different & misses out as he can't do what others to, so to have this trip whipped away when he's been looking forward to it since before Christmas is galling. So many of his classmates are going (80% of the year) & it will just be another thing to bond them further that he just won't get. Breaks my heart for him 💔 But I know it could be much worse, in terms of his health.