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?

After reading around, I think the last 2 have been focal seizures.

An update: DS had an EEG last Monday, 2 weeks after his first seizure. He is currently at hospital with DH for a follow-up & DH tells me has been diagnosed with epilepsy, focal seizures. He will be prescribed medication today. About 3.5 weeks after the first seizure, so I am very impressed with the speed!

In the end, he went on his school trip, with a twist. We took him for about half the time, dropped him off & stayed within an hour of him. Nothing happened the whole time he was there.

So feeling a lot more settled than when it first happened!

That’s all good news.
Our DDs eeg also shows epilepsy. Generalised, we don’t really know what that means yet.
See the specialist in a couple of weeks.
She goes to france tomorrow. I’m bricking it.
Juts want her to have a good time.

I totally get your fear, Smartie! Is there any way of you being nearby while she is away, like we were?

Not really. It would be a lot of money.
My DH is supposed to be away too and we have a younger child.
Just fingers crossed I guess.

Resurrecting this thread pretty much a year after I started it!

It's been an eventful year, started off ok on one epilepsy medication, then he started getting worse so we switched. Then he was better & had been seizure free for 6 months!

Now, suddenly, over the last couple of weeks he has had 3 seizures. 1 at Scouts around 8pm (not far off bedtime) & 2 in the night! After the night time ones he has had a very bad headache/migraine & been unable to function. This morning he was sick too - but fine straight after.

Does this sound normal for seizures? I weighed him & think he's put on about 2kg since his last paediatrician appointment. So hoping his dose just needs increasing?

Also- Pretty certain he threw up his epilepsy meds this morning. Do we give them again?

This really is the gift that keeps on giving, just when I hoped it was under control 😭

Don't give him the dose again without medical advice. Contacting 111 might be the quickest option for this. Certainly sounds like it could be that the dose needs upping. Have you got contact details for the epilepsy nurse? If so, contact them pronto with details and get an appointment. If not then go via GP. My brother had epilepsy from early years and as he grew there'd be a few months/years seizure free and then he'd have one. They'd up the dose and then he'd be good again until he grew some more.

Thanks @Picpac876

I have the number for the epilepsy consultant at the hospital & have rang her a few times before when he had spates of seizures. She is always happy to talk, which is great.

This has just thrown me as he is having headaches & vomiting too, but maybe it's all part of it.

Also, he had been clear for so long I think I thought it was sorted 🙈

Sometimes people do have a headache/migraine and vomiting after a seizure. Sounds like he needs a review, especially if he has put on 2kg.

About the medication I would call the epilepsy team, do you have a specialist nurse attached to the team you can contact for advice? If not definitely call the consultant. Normally medications can only be repeated if vomited up straight away, but I would want medical advice so call 111 for a GP call back if you can't get through to the epilepsy team. Has he ever had an MRI at all confused?

Thanks @Choconuttolata . That is all pretty much what I thought.

I have rung the consultant & left a message, hopefully she will phone back soon with advice or next steps.

He is right as rain now. He vomited after a few mouthfuls of breakfast & all his meds, so I think that not only his epilepsy meds but also ADHD tablets came up, so he has been pretty hyper today 🙈 But not giving him any again as haven't managed to speak to anybody. He will have his usual bedtime dose & we will put him to bed early tonight. We were busy yesterday & a little later than usual, which may not have helped.

Forgot to say he had an MRI before he was diagnosed, pretty much a year ago. He is 13 now, so growing like a weed!

His last medication review was in March. He has been on 3-monthly reviews but they were going to move him to 6-monthly as he was doing so well 😏

My DD is in a similar situation. We had 6 months seizure free and had hoped it was sorted.
Then in January it all started up again ☹️
Breakthrough seizures on a fairly regular basis. She had one this morning in fact. 2 proper tonic clonics since then also.
Meds have been tinkered with but it hasn’t really worked yet. It just all makes me so sad for her. She’s been incredible, so sensible and strong. I just worry for her future.

@Smartiepants79 that is so sad for your DD 😔 I hope you get it sorted soon.

I know this is an old thread, but the saga is ongoing so I wanted to update again!

DS has been on Levetiracetam (Keppra) until now, after carbamazepine didn't work. Dose has increased with weight. He had a few months clear & is now having seizure again, 4 different types (tonic clonic, absence, focal & atonic). So referred to epilepsy specialist, who says this is now drug resistant, uncontrolled, complex epilepsy. He is trying him on lamotrigine, in addition to Keppra.

Although in a way nothing has changed & DS is still the same, this has scared me a lot. What if he is never cured? What if the unthinkable happens? I am very emotional & would love any wisdom/experience people can share please.

I think that is quick to say drug resistant. Keppra did not work for my son it made him angry and he still had seizures. Maybe they need to try a new medication completely.
My son was 15 when he had his first and he was given medication that wasn't nearly enough. Which was confirmed when he switched to an adult private consultant. Who changed his medication and doubled it. It can take some time to get dosage of meds right and it can need tweaking and changing.

This is sad to read. It does sound like your son’s case is particularly complex. He’s had 2 types of meds??
We’re still on the first - levetiracetam. It’s not working yet. She will be increasing again soon I think. She has an average of 1 seizure every 2 weeks. Just did 4 weeks without one then had a nasty tonic clonic at the weekend.
I try very hard not to think too hard or too far into the future. I worry for her and it makes me so sad. I have had to try and start accepting for myself that she may never be ‘cured’. Epilepsy is part of her and may always impact her life. Her future may not look exactly as we’d hoped.
I keep hopeful that we find the right meds and she will be stable in the future.

He had his first seizure around 18 months ago & in that time he has tried carbamazepine then Levetiracetam. Both started off successfully then lost their effectiveness so he is having seizures again. We are also both times seeing headaches & vomiting, with carbamazepine a change in moods & concentration.

His doses have increased quite a few times in line with his weight gain, but apparently after 2 unsucessful drug trials they are classed as drug resistant 😔 He is very light (I think under 2nd centile for weight, like his dad), which doesn't help.

Yes, he had 2 meds & we are now phasing him on to a third, Lamotrigine. Not yet clear whether it will be alongside Levetiracetam or instead of it.

It is so hard when the meds don't work & you get more hopeful with each day without seizures 😔 I know what you mean about accepting the situation, but it is so hard. DS was starting to build independence, albeit way behind his peers & doing well at school, but now that has all had to change. Plus the doctor yesterday mentioned the possibility of SUDEP, which I can't stop thinking about 😔

I hate epilepsy.

He has just vomited again. All his dinner, all over the bed 😔 And he vomited in the car on Saturday. Both times seem to be on days when he hasn't had Langomitrine, so I don't know if that might be something.

I am very worried that he will be losing weight & he really can't afford to 😔 Paediatrician didn't seem concerned about his weight, at least.

Ask your sons doctor about Briviact- it's a newer drug which can replace keppra like for like without any tapering and I've found it more effective myself. Just an idea?

It is worth mentioning, I haven't heard of that before. Thank you. I'm glad it works for you.