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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.
The doctors relied on parents to report how much CBD reduced seizures. And that opened the door for the study’s two most intriguing findings.
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Don Raynor holds Preston’s mouth closed and massages his throat
But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
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“It’s been a constant struggle of trying to limit the number of seizures he has,” Greenwood said of Preston, who at age 1 started as a patient of Greenwood’s. “We have tried literally everything.”
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“Why did we even come down here if he’s not going to take it!?” she snaps.
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She turns toward Preston, and, as if he senses the tension, the cringe on his face pivots into an awkward smile. He starts to laugh, and she does, too.
Charlotte Dravet’s message to parents is simple: Don’t move.
Preston’s at-home nurse Sheila Wall
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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.
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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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