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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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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.
Mapping Preston’s seizures
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July 23 Physicians assistant Tom Dishion talks to Ana Watson and Milly Raynor at Iron Horse Pediatrics in Colorado Springs. Preston has been running a fever for three days, today at a steady 101.9. He has been complaining about his feeding button: “Out, out,” he says. They went from the clinic to an X-ray at Memorial Hospital to check the feeding tube placement.
She turns toward Preston, and, as if he senses the tension, the cringe on his face pivots into an awkward smile. He starts to laugh, and she does, too.
“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”
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It’s not just that parents are taking a gamble by moving to Colorado. It’s that they don’t even know the odds.
Supporters of the CBD treatment say Children’s sample was skewed because the hospital might not be seeing the kids doing best on medical marijuana. State health officials have recommended that Children’s receive nearly $1 million in grants for further research.
Poceta remains cautiously optimistic about the benefits of CBD. He says the California Medical Association has called for increased evaluation of the medical marijuana industry to allow for more research and more information.
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There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
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Step 4: The Colorado Department of Pubic Health and Environment will review the application. The department typically takes about five weeks to issue a medical marijuana card. Incomplete applications are rejected, and parents have 60 days to fix the mistakes. If an application is denied, parents must wait six months before reapplying.
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