Okay, I am going to rant for a second. I am a fan of Doctor Devinsky BUT this statement is stupid: Orrin Devinsky, a neurologist at New York Universitys Comprehensive Epilepsy Center, where he will conduct clinical trials on Epidiolex,[33] a high-CBD drug from GW Pharmaceuticals, expressed his sympathy for those who cant wait for results from research:[1] If I had a child who had failed 15 medications and drug treatments and there was nothing else to do, and they were having many seizures a day that were terribly disabling, I think it would be a very reasonable thing to do to try a high-CBD cannabis product. He also expressed concern that the number of parents using the Charlottes Web extract will make it harder to find children for the clinical trials 1. WTH do we have to fail on 15 medications first? We KNOW that after you fail on 3 (including cocktails), there is almost no chance of success. Therefore, why not move Cannabis WAY up in the list to like #1 or #2 if that is the familys choice? 2. Shortage of children for the study? Are you fn kidding me. We are begging to be on it but have been told no because Alexis isnt catastrophic (in not so many words). We would do almost anything to get on the study and our neuro here in Dallas said he would support us but we were told no. So that is BS. 3. Depakote, is FDA approved for children 10+ with epilepsy which means it is NOT approved for my 8 year old daughter. Neither is Cannabis. Knowing the side effect profile of both, Cannabis is a clear winner IF IT WORKS. We should have the right to try it! Remember, Alexis is being fed a drug not approved ANYWAY and the side effects are gruesome. Sorry to rant but this really set me off and it is from someone we as a family DEEPLY respect!
Posted on: Mon, 04 Aug 2014 02:31:36 +0000
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