alternatives to ethosuximide

[val34]

hi im new my daughter has been on ethosuximide since she was aged 2 and half she came off it in december but however she is having her absenct siezure still so went back on my problem is she is 6 yrs old now and now she has had few months off it she is adamant she hates it and doesnt want to take it ..........her siezures are also appearing to get worse they are lasting lot longer and instead just absence she is now jerking her legs arms,head and chin were however are back was rigid and she stayed in sitting motion ...

i have an app with specialist later this week just wondering if pill form she could take as really struggling to get her to take this we have tried zarontin in past and she disliked this also .

 

[Bernard]

Hi val34, welcome to the forum. :hello:

I'm not familiar with the different forms of Ethosuximide that might be available. You might ask the doctor about it.

I am familiar, however, with the situation where someone comes off meds, experiences seizure activity, tries to get back on meds, and finds they are not quite effective anymore.

If your daughter is not cooperative in taking the drugs, perhaps some alternative options like diet, neurobehavioral therapy techniques or neurofeedback would be helpful. :twocents:

 

[Dutch mom]

Hello Val,

Welcome!

My son has been on the same 2 types of ethosux (in Holland brand names Ethymal and Zarontin) both in combination with other meds (we've tried ethosux together with clobazam, valporate and topiramate) We've used the liquid sirups and he really hated the taste of it. Especially Ethymal was a problem to get in and to keep in. Zarontin went a bit better, we mixed it with a bit of diet coke, tastes a bit like a coke with (too much) rum.

Later on we've had high concentrated ethosuximide in soft capsules. They were quite easy to swallow. We used to hide them on a spoon with food or dessert. But don't bite on them, because they taste even worse than the sirup tastes when opened. The capsules have to be swallowed whole. He has had a larger brown (lika a brown bean) capsule with 250 mg and yellow transparant ones with 125 mg concentrated ethosuximide.

Those ethosux capsules are usually used instead of sirup when children with E. are on the ketogenic diet and still do have absence seizures (and NCSE.) The liquid sirup has wrong sweetners in it for this diet,

We've weaned ethosuximide because it didn't help to control my son's seizures, not the absence seizures and not the tonic-clonic, myoclonic, tonic or clonic seizures. And he had hallucinations as a side effect. I've seen another boy getting in a psychosis due to hallicunations on ethosuximide. Nasty stuff for kiddies in my opinion.

 

[Crazy Monkey]

I have also taken Ethosuximide, but I only lasted a couple of months because the side effects were too bad for me. They gave it to me in liquid form, it didn't taste foul, it was actually cherry flavoured so it was nice and easy to take. (I have a problem with swallowing larger tablets) Maybe you could ask your doctor if the flavoured medicine is available to you.

When I was a kid I took Sodium Valporate for my absences, I hated taking it because it tasted disgusting and then they started to do a 'no sugar' version which tasted even worse.

For me it wasn't because I didn't want to take my meds, it was just that they tasted nasty.

 

[SkaBoss628]

Hi Val.
From what you've said in your post it sounds very familiar to the kinds of symptoms I was having on Ethosuximide. I'd been taking Ethosuximide ever since I was 7 or 8 and always hated it. I too suffered from bad absent seizures and it affected my sleep patterns very badly also. I'm no doctor but I would advise in seeking other medication as when I had enough of taking the Ethosuximide and it having no effect (at least thats what I thought and still do to this day) I stopped taking it and started throwing it down the drain. Ever since I came off it my absent seizures have completely stopped and sleeping pattern is regular once again. I take Keppra now which appears to be working as I'm also being eased off Lamotragine.
I hope all is well with your daughter and good luck.