Trying to get my daughter with a seizure disorder on epidiolex
Has anyone tried epidiolex? Trying to get my daughter on it but has only been approved for certain genetic disorders associated with seizure which she doesn’t have. Hopefully it gets approved for all seizure disorders soon.
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Isn’t it pretty much the same as Charlottes Web? You can purchase that online and there are many who have had success with it in kids. My son (24) uses a CBD product and feels like it helps. Good luck!
No, this is prescribed by a neurologist and is a pharmaceutical. We have tried charolettes web and had no luck.
Since Epidiolex has been approved for Dravet syndrome and Lennox-Gastaut syndrome can’t your Neurologist prescribe it for her for off label use. Most drugs today seem to be used for off label uses anyway.
I assume no other Anticonvulsant or cocktail has been effective. Although Epidiolex is far from the wonder drug some have claimed it to be. It’s effective about 25% of the time. Hardly the miracle drug those of us with Epilepsy were hoping for.
Yes, we were trying but my insurance wouldnt approve it and it’s super expensive but….after 2 denials with more appeal they approved it a couple days ago. Will keep you all posted once we start it!
That’s fantastic news!!! I think I’m as happy as you are that it was approved. I will be thinking of you and your daughter. Hopefully she will be rid of those nasty seizures forever. I heard that medication costs over $30,000 a year. Not sure if it’s true though. If the insurance ever stops paying for it you can ask the manufacturer to help. They do occasionally give patients expensive medications for free or very little. Looking forward to hearing from you with positive news.
Blessings, health & happiness to you both,
Yes, it’s very expensive but they have a assistance program so actually we only pay $25 each refill till we hit our deductible
That’s great, glad you got it. Is it helping or is it too soon to know.
Health and happiness,
Starting today at low dose will probably know in a couple weeks to months if it is but will keep you all posted!
Hi, @mmas – here's a Mayo Clinic article on the drug approved by the FDA for epilepsy you are taking about, the liquid medication that's sold under the brand name Epidiolex https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treatment-with-medical-cannabis/
How's it going so far with your daughter?
Haven’t noticed anything good or bad since we have started. Only been a week and a half so will have to give it more time before we really know if it’s helping. Will keep you all posted!