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“An uncontrolled experiment”
“Oma” — Preston’s grandmother Milly Raynor
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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.
A roller coaster
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July 12 Ana watches Preston fight off his first dose of CBD oil, being administered by a family friend who was visiting from North Carolina. The dose went into Preston'’s mouth, but he immediately spit it out.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
A family photograph of Preston as a baby.
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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
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Preston’s at-home nurse Sheila Wall
Preston and others take a first look at the plants
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But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
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