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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about to start on Epilodex. Apparently in Illinois, Blue Cross/Blue Shield insurance will cover part of the cost. He has been on Medical Marijuana for several years (in the form of an oral oil). It has helped a little, but has not completely stopped the seizures or improved his activities of daily living skills. What it has done is improve his ability to bear weight so that I can transfer him from car to wheelchair and back, so that he can attend his day program. So that definitely improves his quality of life. The cost for that--about $500.00/month--is not covered by insurance. We have a wonderful neurologist who is willing to do all the paperwork for us to try these treatments. She is semi-retired, but still sees a few long-time patients. We are very grateful to her.
Replies to "Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about..."
Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But...when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.
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@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