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She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
Preston and others take a first look at the plants
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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.
Don Raynor holds Preston’s mouth closed and massages his throat
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For more info about states with pending marijuana legislation, go here.
Preston loves country songs — the louder, the better.
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“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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Dravet isn’t like other epilepsies.
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“Basically, we’ve tried it all,” Ana says. “That’s why we moved here for CBD. His doctors said we can’t go up in his meds anymore, and we were at a stopping point.”
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Children have arrived here nearly lifeless. Families have lived out of motels when they couldn’t find housing. Parents have shown up at a medical marijuana provider’s house in the middle of the night.
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