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The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.
So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.
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On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
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The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
Related: Every patient’s Dravet syndrome is a little different
Step 1: At least one parent and the child must be Colorado residents. Residency can be established quickly.
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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.
Preston isn’t feeling well
“OK,” Ana says as she fills the capsules. “It’s not going to be pretty.”
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To doctors concerned about recommending unregulated cannabis products to their patients, the future of medical marijuana is growing in the south of England...
June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
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July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
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His hunting spared no one. He drenched Milly. Sydney escaped back inside, water dripping down her hair. And Preston laughed with such big gulps of air that it sounded as if his own joy might strangle him. Until, suddenly, his laughter stopped.
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