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Ana Watson and nurse Chelle Bennett carry Preston
Missouri
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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”
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.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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“But they don’t seem to me to be as long,” Ana said.
Since then, she says he has had far fewer seizures and is able to sleep through the night.
And so this was the logical next step. A leap into the unknown.
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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.
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.
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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
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