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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
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On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill, sponsored by Republican Rep. Matt Gaetz, calls for "four regional orginizations around the state" to "grow, test and dispense" the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure con***ions; patients with Parkinson's, Alzheimer's, PTSD and cancer would also qualify. It was passed by a 111-17 margin on May 1. The Senate version passed the bill by a 36-3 margin on May 2. Gov. Rick Scott signed th bill into law on June 16, making Florida the ninth state to legalize CBD oil.
Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.
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June 22 Preston is in all his glory with his grandfather, “Paw Paw” Don Raynor, for his last ride on the Grasshopper in North Carolina before the move to Colorado. Preston’s family wants to try CBD oil to control his seizures.
October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
Over the fireplace hung a photo of Preston in a straw cowboy hat. He’s shirtless, leaning onto his left elbow. His mouth is closed and his eyes set in a stoic glare, and he appears startlingly mature — a boy trying to look like a man trying to look like a rock star.
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Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.
Related: Every patient’s Dravet syndrome is a little different
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“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”
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On Apr. 30, 2015, Gov. Mary Fallon signed legislation making Oklahoma the 14th state to legalize CBD oil. “This bill will help get sick children potentially life-changing medicine,” Fallin started. “By crafting the legislation in a way that allows for tightly controlled medical studies, we can ensure we are researching possible treatments in a responsible and scientific way. It is not marijuana, and it is not anything that can make you high. This law has been narrowly crafted *****pport highly supervised medical trials for children with debilitating seizures."
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