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A nurse stops in for a quick check
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.
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But Ana’s jaw clenches.
But the results were ultimately even less conclusive.
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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
This time, she walks to him without a smile. She leads him into the bathroom and pulls down his diaper. She muscles him close.
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July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
New York
An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
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Ana Watson watches as Preston gets his first dose
To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.
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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.
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May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
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