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Preston yawned. Did that mean the marijuana made him sleepy? Preston ate. Did the extract make him hungry? Preston didn’t seem to seize as often.
The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
Schedule 1 drugs (which are illegal and include LSD and heroin) are said to have "no currently accepted medical use and a high potential for abuse." The announcement published in the Federal Register last week details the new ruling for CBD, which sets aside a new code number for "marihuana extract" and pertains to any "extract containing one or more cannabinoids ... derived from any plant of the genus Cannabis." This decision came despite the fact that CBD from hemp—cannabis with no more than between 0.3% and 1% of the active ingredient THC—has been widely available up till now via mail order and the internet.
“We don’t make recommendations”
June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
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.
When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
“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.”
“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”
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Preston helps “Paw Paw” Don Raynor
As a pediatric neurologist, Greenwood had treated hundreds of kids with epilepsy in his 37-year career. But Preston’s case was a unique challenge.
An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped.
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