Seizures in children

[Chilli]

Does anyone have any experience? My 4.5 year old son had a bad one on Friday (lasted approx 20 mins) so straight to A&E. All tests were done including an EEG and a lumber puncture. All tests came back negative, but as he had a further 2 tiny seizures whilst in ICU (lasting about 10 sexonds each) the specialist has put him on Keppra and also Epanutin.
However, he's having a bad reaction to these drugs and is regularly vomitting, sleeping and is generally not himself.
Cant get to see the specialist for a few days so wondering if anyone had been through a similar experience?

Cheers.

[WinstonWolf]

My eldest had petit-mal seizures when she was younger, it was as if she completely stalled. Very weird...

She was on Epilim for a few years, she has had no lasting effects and hasn't had any form of episode for well over a decade.

[Chilli]

Thanks...how old was she?

[WinstonWolf]

A similar age to your lad. Seizures in children are not uncommon and they often grow out of them. My daughter's were only petit-mal, she wouldn't shake it was as if her brain completely shut down and she just froze temporarily.

Lots of info out there, some scary, some good as with everything on the internet. People rarely post about the positive outcomes

They seem very manageable with the correct medication these days.

Good luck.

[Chilli]

Thanks...very scary, thought he was a goner in the car going to A&E. Just dont like him being on theae drugs given they are giving him such bad side effects.

[WinstonWolf]

They sure are! It can take a while to find the right medication, I'd just mention the side effects to the pro's and probably read the leaflet that comes with them if you already haven't.

[Prof Prolapse]

Not a medic. Worked in childhood epilepsy research for about two years though. It's unpleasant illness, but it's a broad spectrum mate, and at one end of the spectrum a great number of people lead perfectly normal lives.

It's fair to say a lot of the medications used to treat Epilepsy are very old, and can be fairly brutal. Unfortunately there also aren't many medications which can safely be used in children which limits physician options, but it is early days.

Children have youth on their side, they can adapt, and if you discuss your concerns with the specialist, there may be alternatives they are willing to try if the side effects continue to be unacceptable.

Best of luck.

[Chilli]

Thanks gents. I hate to say it, but hospitals here in Dubai are run like businesses....its all about money and getting insurance to cover everything....ive seen it 1st hand.
Just looking for a 2nd opinion...perhaps a trip to Great Ormansld Street....once I've sold a kidney, of course.

Thanks again.

[FlyingMeeces]

Not a medic, just a (now bereaved) parent of a kid who had a few 'probable' and some more 'possible' seizures in her life.

Initially it's always gonna be throw drugs at it, get things under control. More important to avoid any further major seizures than it is to avoid some level of zonkedness in the early days. The important bit is, they're not gonna be looking to leave it like this. Now they've got control, no more seizure activity, they can start figuring out which drug(s) and how much, achieving a good balance between good seizure control and avoiding side effects. I don't think any neurologist would be OK with leaving a kid on meds causing such significant side effects until/unless they had absolutely exhausted all other options, and clearly they're nowhere near that yet. Not gonna say no worries because it's pants-sttingly terrifying watching your kid seize, but I hope it reassures a bit to say this is not what anyone intends to be your new normal. Just one bend of many on the road.

All the best.

(If you're wanting a second opinion and from outside the country, from Dubai I'd seriously consider Israel, passports/visas etc permitting. Good kids hospitals, child-focussed approach.)

[Chilli]

Mate, so sorry to read your post.....i cannot begin to imagine how hard that must be to deal with. You have my sincere condolences, and i with you the best.
We went for a 2nd opinion today and the doc said the meds he is on are standard ones to gain control, exactly as you stated.
We jist have to get over the period until his body gets used to them, and we have a follow-up appointment in another weeks time.

Thanks again for your post, and the very best for the future.

Cheers.