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August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
July 12 Ana watches Preston fight off his first dose of CBD oil, being administered by a family friend who was visiting from North Carolina. The dose went into Preston'’s mouth, but he immediately spit it out.
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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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There are times, Ana said, when she can almost see what Preston could become if the seizures would just let him.
Poceta remains cautiously optimistic about the benefits of CBD. He says the California Medical Association has called for increased evaluation of the medical marijuana industry to allow for more research and more information.
“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
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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.
“I know!” Ana pleads. “I’m sorry!”
May 29 Krista Ranken cuts shoots in order to clone plants in their vegetative state. The Stanley brothers have specialized in breeding high-CBD strains of cannabis, including Charlotte’s Web, for Colorado Realm of Caring patients.
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“Beautiful,” another wrote. “So beautiful.”
The journey would be harder and more complicated than she ever imagined.
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This extraordinary different – opposite – set of reactions is critical in the understanding of cannabis. The media and the general public must e educated to the full picture, rather than the inaccurate caricature so often painted.
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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.
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