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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.
He leans in to give her a kiss on the cheek. A maroon line on the computer screen jumps to life.
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Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.
Ketogenic diet, the doctor asks?
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“It’s tested not only for the THC and CBD levels, it’s tested for pesticides, pathogens, anything that could be really harmful to the consumer,” Hartsel said. “We produce CBD on a large scale. Right now, no one is doing that."
In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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Ana’s reply is quiet.
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Preston watches Dr. Maynard
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The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.
Cibdol also tells a good story about the quality control of their CBD oil products, but they give very little insight into what this actually means. Cibdol claims that their product meets strict cannabinoid content guidelines but also gives no indication what this actually means.
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“Wha doin’?” he shouted between seizures, because he didn’t know what it meant for the movers to be there.
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By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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