Stiripentol

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Epileptic Boy's Mom said:
Hi, just wondering if anyone has any experience with Stiripentol? My son just started on it. Thanks! :)
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Hi Epileptic Boy's Mom,

Welcome to CWE and nice to have you with us and members will answer in due course regarding Stiripenol which is given to children with Severe Myoclonic Epilepsy.

I hope the link below helps in the meantime on information more regarding the medication :)

http://www.medicinesforchildren.org.uk/search-for-a-leaflet/stiripentol-for-preventing-seizures/
 
Sorry for the slow replies--I haven't seen this discussed on this forum before myself, nor have I heard of this medication. Has it shown effectiveness at all yet?
 
Thanks for your reply. It is a new drug - mostly used with Dravet kids and is showing to be successful. I have heard from one mom who says she noticed a remarkable difference in her son on it. My son does not have Dravet but has 2 sodium channel mutations (SCN8A and SCN9A). Being that they are both sodium channel mutations we thought it would be med that could possibly work. We are from Canada and the med was only allowed for Dravet, but has recently opened up for people who the Doctor thinks may be beneficial. It is not FDA approved but people in the us can apply for special access I think? My son just started on Friday with this med and had been seizure free for 3 weeks (the longest he's been in a while). Unfortunately he got sick and his seizures returned in full force. He went into Status Epilepticus and we had to call 911. From start to finish he must have seized close to an hour. This is the longest he has ever seized. I don't think it was the new med though - most likely because this is a nasty virus/flu he caught. I'll update his reactions if any or any successes he has with this med when he's been on it a while.
 
Oh and it's really expensive!!!! It costs over 1300 for a 3 month supply at 250 mg twice a day!!! Thank goodness for private insurance....
 
Yes getting sick can really lower your seizure threshold. I'll hope it was that, and good luck with this drug--I hope it makes a good difference. If not, I'm wondering if you have considered the CBD oils that have shown so successful for some kids with Dravet's.
 
Yes thanks. We do want to try CBD - I did make a post under the bulletin section regarding a petition to make it available for kids with epilepsy in Canada (would love if you sign!!! Lol). I know that The Realm of Caring has partnered up with Health Canada but of course they are dealing with lots of delays right now.
 
I have not heard of this medication, but just want to welcome you. I am fairly new here myself. Have had epilepsy since the age of 9. Am now in my 40's.
 
Hi Epileptic boys mom,
My 3 year old Daughter was diagnoised with Dravet Syndrome last July. She started on Stiripental just over 4 wks ago. So far our experience has been a positive one. Her behaviour has been much better, less temper tantrums. Her attention span has improved tremendously and she just seems all together happier in herself. Early day yet, but all seem good so far....
Kerry
 
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