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Children's health

Can epilepsy come back?

7 replies

whojamaflip · 12/05/2017 19:14

Ds was diagnosed at 18mths with myoclonic seizures with occasional absense seizures. He had one tonic clonic episode which resulted in him being hospitalised but thankfully he responded to the first medication we tried (sodium valproate liquid) he was fit free for 3 years on the medication and we started to wean him off when he was 5. He's now 10 and been off meds for 4 years with no signs of any problems.

However he's had a couple of occasions recently when he's said he doesn't "feel like he's in his body" - I put it down to tiredness and he seems fine. Today I got called into school as he'd had a huge jerk when he was getting a ruler from under the desk. His teacher says his head shot up and back with enough force to lift the table up and he's given himself quite a bump on the back of the head.

He was apparently quite shocked and tearful afterwards and didn't seem to know what had happened. School still has the protocol from when he was on his medication in ks1 so called me.

My question is, can infantile epilepsy return? I was under the impression that if they grew out of it then it would be rare for them to have fits again when they were older.

I'm obviously keeping a close eye on him but he seems his normal self.

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GruffaloPants · 12/05/2017 19:16

Yes, it can. I think you need to get it checked out medically now.

I've got Juvenile Myoclonic Epilpesy, it tends to be lifelong. The good news is that your son previously responded well to medication.

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ItsAdam · 14/05/2017 03:05

Just as my two cents, I suffered from teen epilepsy, my uncle had it and it appears I got it too. It was usually because I got too hot and stuffy and didn't have fresh air. There's usually a tell tale sign a fit will start, it will be dizzy, feint and I had what could only be described as a kaleidoscope of fast changing colours in the top right of my vision. I always woke before having one, medication reduced the amount but eventually age took me fit free. Opening a window wide and having a big grasp of fresh air could stop it!

That's when I was in my teens I'm now 34 and some times I get the feeling pre "kaleidoscope" that makes me think I'd have one. Tiredness and lack of food is usually the cause, never had a fit since I was 15 though.

Its a horrible thing though, I remember one night getting up and calling for my dad to wake up later on with 2 dead legs, I'd only gone and fitted halfway down the stairs and got my legs trapper in the baby stair gate we used for my little brother! Funny looking back at it!

Never found out why I fitted, only guesses - was told that it could come back but doubtful.

With his age it could be entirely possible for it to return for a teenage version.

Regarding the tablets (I had something called tegratol retard) wasn't a great name for a kids medicine, I was told I could be on them for life!

You should have a specialist, or be referred to one asap via Doctors. It wants looking at ASAP it's a horrible thing to have and to witness! I really feel sorry for my dad and the times he had, and for you guys! It must be heart breaking to see.

Get him seen as an emergency!

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highinthesky · 14/05/2017 03:11

'Epilepsy unfortunately can have a very unpredictable course. Please go back to DS' specialist team, or via the GP for investigation and management.

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1nsanityscatching · 14/05/2017 03:57

Yes db's epilepsy came back with the onset of puberty and he's been on medication ever since as he's never been completely seizure free (now in 40s)

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whojamaflip · 14/05/2017 11:52

Thanks for the replies - no further signs of anything so far but keeping a very close eye on him, have also had a quiet word with those who are in contact with him so they are aware there may be a problem again.

Im also avoiding talking to ds about it as he is very young for his age and a worrier (about 18mths behind socially and emotionally) - all I have said is he is to let me know if his head feels funny.

Re getting him checked out - I'm assuming I will have to go back via the GP as he was discharged from paeds over 2 years ago or should I drop his consultant an email?

I'm wary about wasting their time over something which feels at bit something or nothing at the moment but equally I don't want to leave things without checking them out

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ItsAdam · 14/05/2017 12:09

Better to waste someone's time than your previous one get an injury! Plenty of people waste time in the NHS, at least yours is justified. If you have the consultants email id ping him or her one over and see what you get back!