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The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
They look at different forms of epilepsy, different kinds of seizures and different measurements of success. At least five different types of CBD-rich marijuana therapies are represented in the studies.
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
The toy was a Slip ‘N Slide, on which he and his sister, Sydney, were supposed to be shooting across the tarp and under an inflatable shark’s mouth that held a spraying hose. Instead, Preston grabbed the hose and became the shark.
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A carefully designed watering schedule
Preston’s breaths grew quieter.
“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
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The oil is not cheap. According to Charles Vest, the Vice President of Communications for HempMedPX, a week’s worth of their most potent oil cost about $400 to $500.
Most important, no one knows how often it works.
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She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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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The seizure — the second grand mal in a week — flustered Ana. And that’s why she finds herself back at the house in eastern Boulder County. Jason Cranford meets her on the porch.
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October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
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