Side effects of epilim

[ahenderson270]

Hi - not sure if this is in the right section so please bare with me:

My youngest is 4 and has an Arnold Chiari malformation type 1, it's a very large herniation of 2cm (average herniation is 5-10mm). He also has epilepsy, quite a serious global form so it was decided to commence him on sodium valproate (epilim) in feb 2019.

He initially had the sleepiness and adjust period that lasted a few months but he's almost seizure free now, he only has occasional vacant episodes now rather than several clonic tonic seizures daily.

However since the beginning of December we've noticed he's losing his hair at quite a rate .. the first few pics are from before Christmas and the last ones from tonight.

We notified his GP when we noticed and she hasn't contacted us, neither has his DR should we be pushing this?? My greatest fear is him being bullied when they go back to school

Sorry it wouldn't let me upload all the pics - this is from tonight

It would seem strange that the Epilim would cause this after being on it for so long? Has anything else changed?

I have a child on Epilim - been on it for over 18 months now - and haven’t experienced this.

That's what we thought but thats all he's on and according to sr google (I know I'm a knob 🤣) most of the side affects can come on at anytime because the nature of sodium valproate is that it builds in the liver - that's why they have to have regular reviews x

I guess the question I'm ultimately driving at is .. if it is the epilim causing it and he's no other serious side affects what would you do .. let your 4 year old go bald or risk a new med not work as well for them .. I reasonably know the answer but he's had such a rough ride in his short life.. the Arnold Chiari means he suffers horrendous migraines, nausea, fatigue, pain, balance and swallowing issues .. he's partially blind too, has epilepsy and a respiratory disorder.

All this has stunted his growth, or rather left him very disproportionate.. his head circumference is off the centile charts at 56/7cm and he's only just on the 25th centile for height at 102.3cm tall.. his head is a very deformed shaped as part of the Chiari because his skull is compressed at the back and hasn't formed properly .. so with short hair it's very very obvious, as is his protruding forehead.

I'm just devastated at the thought of the bullying he likely has coming :(

I’m no expert on Epilim, apart from our family’s experience, but I would have thought if it was building up in his liver there might be other symptoms too - abdominal pain, bruising etc.

You’ve really had a time of it haven’t you? Are you planning on mainstream school? If you are, think about introducing his conditions to the class and being up front about how he likes to be interacted with. There’s always a risk of bullying, but I have seen kids look out for each other too.

@BurningGubbins

He's already started in reception class this year and honestly the school have disappointed us thoroughly. It is a mainstream school so we had hoped they would at least have a discussion with the class but there's been nothing at all.

He had a spell last term with a few of his class mates being rather entertained by his 'funny eyes' ; both eyes move in opposing directions when he removed his glasses owing to the severity of his impairment - they were taking his glasses from him because moving eyes were just so funny!!

Schools response was 'they're only playing' when DS lost his temper and gave one of the offenders a good shove we were told if he continued to be aggressive they'd have to consider a reduced time table 🤷🏻‍♀️🤷🏻‍♀️

Well that is just total shit, isn’t it? Perhaps this new development warrants a meeting with the teacher/head so you can review how everything is going, 1 term in?

@BurningGubbins that's exactly our plan, managed to sort one for the 10th so fingers crossed we get on top of this because I took him to a pharmacy yesterday and he's told us that for the hair loss to have started after he's established on sodium valproate would mean it'll continue until he comes off it which I'm not prepared to do because it works so well xx