Topomirate for epilepsy/cognitive slowing and medical education

[drspouse]

Long story, will try to be brief.
DS has ADHD and is in specialist school. He's been broadly at mainstream level except for writing as he has dyspraxia (and has struggled to learn to type too).
He also has epilepsy and around Easter his fits got worse and he was switched to Topomirate.
It didn't help his fits much but his school thought that some of his post-fit combative moods and confusion were behavioural issues. His school is also rural and not close to the hospital.
He had a hospital admission in July and over the summer he's been SO confused. It's possible it's the medication but he's been wandering off, repeating everything but using the wrong words, can't do simple things like put on clothes or do a maze which used to be his favourite. Plus it wasn't stopping the fits.
We've switched again to lamotrigine.
But we are worried about him going back to school and it could be months before we know if he's going to go back to normal for him.
It's really upsetting to see him like this and he also keeps wandering off when confused and getting lost but he needs to get out and do things when he's feeling ok.
We are enquiring about a medical unit locally which is for children whose main school can't handle their medical condition.
Everyone I've spoken to has said their only experience is hospital school (but he isn't an inpatient) or tutoring/online (he never engages with this anyway but he's SO impaired he won't know what's happening).

Does anyone else have a medical unit in their area or any similar experience? He's going in to Y8 and was doing Y6 maths and reading a bit lower but now can't even do maths from about Y3. We have no idea what they can do for him.

It's also really odd because though he's generally difficult to manage in terms of behaviour now he's just quite confused and slow to react. We currently get middle rate care and low rate mobility for DLA and we are considering applying for higher rate due to his nighttime fits and wandering off when out and about.

Topiramate is known as Topamax in America and the doctors there have nicknamed it Dopamax due to the effects you describe.

The change in DS may not be down to the medication, but I wouldn’t rule it out without speaking to his doctors.

I've tried to look up whether he could have sustained brain damage as a result of his seizures but everything seems to suggest it's the other way round, that if he'd had brain damage it would lead to seizures. It's been so sudden - basically overnight since he was in hospital.
It's what we'd normally see for half an hour after a seizure but it's all the time, for weeks.

There is some association of neurobehavioural toxicity and cognitive impairment with both topiramate and lamotrigine, especially in children and the elderly. Honestly, if your neurologist hasn’t already referred him, I’d suggest a neuropsychological assessment with a psychologist to get a better understanding of his current cognitive functioning. Knowing what’s currently going on for him should help you help him, both in the longer and shorter term. What does his neurologist think?

We haven't seen a neurologist yet as we've been under a paediatrician for both conditions.
He is notoriously difficult to assess and has a massively spiky profile anyway. He was supposed to have an EP assessment last term and the EP didn't even see him in the classroom because he'd been sent home (he was not that well but could have been in school, but they kept telling us "it's behaviour" when we knew it was epilepsy).
Though he actually might be easier to assess now as he's calmer!

What dose is/was he on and was it administered slowly at first to titrate?

I am on Topiramate (have been for many years) and (luckily!) have none of the associated side effects. I started out on a really low dose (25mg daily) for a month then very gradually, over several months, was 'up-titrated'.

My ds attends a PRU that is a home and hospital school, he has to be dual registered with his last school, but won't be going back there (though they tried really hard with him) although called h&h realistically they deal with large amounts of semh as well, which isn't a bad thing.
It wasn't easy getting him in, at his worst he was having 4-5 ambulances a week for seizures at school. At his new school he's down to about 1 and can go a couple weeks occasionally with none, they have no medical staff but higher ratios and familiar faces in hospital

With your ds and the wandering have you ever looked at complex partial seizures?

Post seizure my ds can become incredibly fight or flight, it can be a normal reaction post seizure.

@twentysevendresses he started on 25 and it was titrated slowly but now at 100mg it has been awful. He's back to 75mg morning and night but no real improvement and still some seizures.

@imnotalpharius that's really positive, we've only had one ambulance this summer but we think a lot of non-tonic clonic were not being recognised in school.
We have not looked at complex partial yet, it's been absences, tonic clonic and a few focal but not that many.

@drspouse sounds like it has been administered properly then (often it's not!!). So sorry you are going through this and I hope you are able to get support for your son. 🤞

My ds also has asc and ADHD as well as epileptic fits he has non epileptic ones too, it's all a bit of a minefield so you have my sympathies.

To get a place at the h&h he needed an EHCP and it is only part time provision so finishes at 12.30 everyday, your local provider might be different. We are hoping at point to transfer to a special school when he is more stable for full time.

Anti-epileptics are a minefield and really trial and error imo. Lamotrigine made ds worse, he's currently on a cocktail of epilim, brivaracetam and clonazepam, so don't be afraid to mix meds. Keep a close eye on weight though as I find if they put weight on and the meds aren't adjusted it can have a massive impact.

@imnotalpharius ours is a full school day I think, and has a "medical" and "behaviour" side. Luckily with the ADHD meds I think we are likely to see appropriate growth for age.
He used to be on valproate but that clashed with a previous ADHD med so maybe they will look into adding that back.

If he has any odd events you aren't sure about (ie if they are seizures or not) then try and video them - and get his paed dr to review. If he's not improving get back onto paeds - if the sedation is drug related his meds need changing, and they should consider if he's actually having seizures with no movements (subclinical seizures) or if his confusion has a totally unrelated cause.

Thanks all, we are having a lot of episodes of stuck record speech too as well as the wandering off. He'll get an idea in his mind and repeat the same thing over and over again, at least 20 times. If I think of anything else I'll put it here to remind myself for the appointment.

I would be asking for a video EEG if possible, one lasting more than 1 day to try to catch the episodes of confusion/stuck speech etc and see if they are seizures themselves.
Yes having a large number of seizures or very extended ones can cause brain damage. However behavioural changes and confusion etc are also common medication side effects. Hopefully in your case it's the later and as the medication is weaned he will return to his baseline.
Maybe if you said whereabouts in the country roughly you are people might be able to give you some ideas for schools to try?

So he's still on the toprimate then?

I take it, I'm on 50mg morning 50mg night. It really does effect your ability to concentrate and think straight. I've never gone over this dose for long as it doesn't give enough of an improvement for me but with increasing side effects it's not worth it. I'm looking for alternative treatment as it is.

One of the biggest issues I have is totally forgetting my train of thought. I can't hold information in.my head, I think of something and then it just goes. It's very frustrating 😑, so it's very possible it could be the medication.

On the positive side I've been offnthis drug before and when weaned off it did return to normal fairly quickly. I had been taking it for years as well, I know it maybe different for children. Hopefully they can find something more suitable for him.

He's currently on 25mg lamotrigine am, 75mg topomirate am and pm. They don't want to start the lamotrigine too quickly due to kidney? liver? Can't remember which but severe side effects.

We are in the NW but currently we need a temporary school if his SEMH school can't cope. There's only one LEA option but it it's for a few months and is near the hospital that's ok.

We will ask about 24h EEG.

OK so we continue to wean off topomirate/on lamotrigine. Happily in school this morning but went in the wrong door, such is the confusion, also couldn't find the drawer with the spoons or remember what "dishwasher" meant, massive refusal to read simple instructions (we are not sure if that's can't or won't but it's usually can't).
LEA rang us to say they are happy to do a referral but it must come from school, but school have already said they are considering it. So it looks like it might be happening!
Medical unit has, in theory, a uniform which will be unwelcome news to DS!

(No increase in fits, at least, but still has had a few in the last week. I know confusion might take ages to go away with the topomirate getting out of his system).