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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
@pamelastewart5
Hello again,
You have probably read the thread about epidiolex but in case you haven’t @mmas is giving it to his 6 year old daughter. It hasn’t been helpful the last time I heard from him but now she should be on the maximum dose. Hope he updates us soon. I thought I read Epidiolex was about 25% effective but I can’t remember if that was for Tonic Clonic Seizures or it’s overall effectiveness. I’ll try and get some accurate info about that. Does anyone know? Atonic or Drop seizures associated with Lennox–Gastaut syndrome appear to be nearly 42% effective provided its used as an add on medication in adults.
Not quite the wonder drug they had thought it would be.
Best wishes,
Jake
Replies to "@pamelastewart5 Hello again, You have probably read the thread about epidiolex but in case you haven’t..."
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We haven't started Epidiolex yet because yet another form needs to be filled out by the neurologist. Once we do start, I will report on my son's progress. He had atonic seizures as a toddler, but now he only has grand mal seizures when he sleeps. We are grateful for that--many fewer injuries! He has tried many different med without success, so we aren't expecting a miracle. But. . .hope dies hard! And we are hoping for the best.
Thanks for your info, Jake. You know a lot!