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“Paw Paw” Don Raynor The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression. On Nov. 8, Florida voters to legalized medical marijuana. Holding racks with cannabis plants Don Raynor holds Preston’s mouth closed and massages his throat Our pledge to you 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. Preston’s at-home nurse Sheila Wall North Carolina “What we would like is to get that to like a month’s supply for that amount of money,” Vest said. “We want nothing more than to have the cost be the same as sugar or salt. More and more people find out about it, the lower the price will go.” High-CBD strains of cannabis growing Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen. But, to get a true starting level, the EEG meant Ana would need to take Preston off CBD temporarily. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days. A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it. In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained. While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain. May 8 Ana Watson has to keep a tight rein on her son, Preston, as they head off to school. “He is fearless,” she said. “He will walk straight off of the steps without looking down to see where he’s going.” Preston also acts totally on impulse “if he sees something he wants. Or if he gets a chance, he will run right after it — and he’s fast.” “OK,” Ana said, “One more minute.” Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here.
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