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“Have you tried Stiripentol?”
The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her.
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Legislation allowing for low-THC, CBD-rich marijuana oil has been approved for limited use in 14 states.
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Preston helps unload the trailer
“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
Ana Watson has decided to try adding THC
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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
While Preston played later in the backyard August sunshine, his eyes seemed to roar.
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Preston meets Dr. Alan Shackelford
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For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.
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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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