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“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”
July 29 Preston meets Dr. Alan Shackelford at his office in Denver. He and his mother, Ana, are visiting the doctor for help with Preston’s dosing. Shackelford evaluated Preston’s physical con***ion, then went over his medical history with Ana and her mother to figure out a starting point to use the CBD oil.
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Graphic: Inside look at Preston’s fight
It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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May 7 Preston resists his mother’s gentle requests to get up as he curls up to his little sister, Sydney, 8. Ana Watson’s mornings quite often start with both of them in her bed at her North Carolina home.
Ana and Preston head off to school
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May 11 To make sure Preston doesn’t bolt, Ana is tight beside her son, who wears his cool-down vest. The vest keeps his core temperature even. Here, he fishes and teases Lexi with a bluegill they just caught on Mother’s Day. It is a beautiful day for their last visit to one of Preston’s favorite places in North Carolina — the “lodge” at the Piedmont Quail Club, which his grandfather manages.
But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
Dravet isn’t like other epilepsies.
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Graphic: Mapping Preston’s seizures
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“Keppra often causes behavioral issues,” the doctor responds.
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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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