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Step 1: At least one parent and the child must be Colorado residents. Residency can be established quickly.
She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.
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.
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Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?
“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
Preson’s eyes slowly opened somewhere under the fluff of his mother’s comforter.
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An absent seizure
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.
October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
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“Colorado represents hope at this point,” she said. “This is the state of hope.”
The doctors relied on parents to report how much CBD reduced seizures. And that opened the door for the study’s two most intriguing findings.
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The CBD oil she was using then was a roughly 35:1 mixture of CBD to THC. But Ana, concerned that she wasn’t using the best formulation, sought out the opinion of a Denver doctor who specializes in making medical marijuana recommendations. The doctor, Alan Shackelford, suggested Ana try a mix with more THC.
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“For the doctor to know what they need to know about an illegal drug is a very high expectation,” said Dr. Jacqueline French, an epilepsy specialist at New York University’s Langone Medical Center. She said CBD is “driving the conversation” many doctors now have with their patients.
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