I always appreciate Jake's input and knowledge. Thank you, Jake!
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Thanks, Jake. We will bring up the possibility of increasing his dose. At this point, he is status quo–about the same as he was before we started the Epidiolex, when he was on Dilantin, Celontin, and Med. Cannibis. The Med. Cannibis is now gone. He has 1-3 seizures a week when he sleeps, dozes a lot during the day, and bears weight with assistance.
Hi, Everyone, My son, Caleb's, Epidiolex has been therapeutic for about 2 weeks. He has had a few seizures in this time, which is usual for him. When he got on Epidiolx his Medical Cannibis was discontinued. On the whole, I think he is a little less able to bear weight during transfers now. That was the one area that improved with Medical Cannibis. His drowsiness is about the same as usual. We haven't noticed any other side effects. Has anyone had true success with Epidiolex? I would love to know. It is certainly more affordable than MC. The high monthly cost of MC was draining us. But if Epidiolex doesn't work at least as well–or better–we have to reconsider all options, I guess. Will MC become more affordable in January in Illinois?
Thanks for any input.
Caleb always dozes off a lot during the day, and that has not changed. He had one grand mal seizure yesterday afternoon, while dozing in his wheelchair. That is his first seizure since he started on Epidiolex. His dose is still low. No other changes, bad or good, so far. I hope this works.
Thanks for your interest!
My 40-year-old son, Caleb, started on Epidiolex 5 days ago. It was a long procedure to get approved, but so was getting approved for Medical Marijuana. He has Lennox-Gestault Syndrome. His diagnosis is based on his symptoms and the course of his illness, which started at age 3, not on his EEG. This is the first drug he's tried which is specific for Lennox-Gestault. Insurance is covering most of the cost. He is starting at a very low dose which will be slowly increased. The dose now is not yet therapeutic. No seizures since he started Epidolex, but in recent years he no longer has daily seizures. We haven't seem any other changes yet. I will keep the group posted on his progress.