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October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
May 11 To make sure Preston doesn’t bolt, Ana is tight beside her son, who wears his cool-down vest. The vest keeps his core temperature even. Here, he fishes and teases Lexi with a bluegill they just caught on Mother’s Day. It is a beautiful day for their last visit to one of Preston’s favorite places in North Carolina — the “lodge” at the Piedmont Quail Club, which his grandfather manages.
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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.
Dravet isn’t like other epilepsies.
August 6 Preston’s grandmother, Milly Raynor, supports his head as she tries to untangle him from a hose he tripped over, and a seizure kicks in. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. A doctor’s appointment the next day reveals a broken bone in his foot.
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“I know!” Ana pleads. “I’m sorry!”
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After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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A roller coaster
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.”
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Step 3: Parents must fill out an application and get it notarized. The application includes a parental consent form that both parents must sign. Parents must submit a copy of the child’s birth certificate, and they must list themselves as their child’s medical marijuana caregiver.
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His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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