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Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
September 17 Preston helps “Paw Paw” Don Raynor tighten gates on the stairs during his grandfather’s visit from North Carolina to bring wife Milly her car. Milly has moved into her own apartment to relieve some of the tension that can arise between her and Ana. She plans to live in Colorado as long as her daughter and the children are here.
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Preston rests on his porch
Everyone in her family has their own vision of what Preston might be. Ana’s mom sees Preston getting a job at a park running a lawn mower. Ana’s dad — the man who taught Preston how to be a boy, to love mowers and tractors, and to shout, “Crank it!” — imagines playing catch with his grandson.
His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
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.
In her hand, Ana holds the first dose of what she hopes will finally stop the seizures. More than a dozen medicines have already failed, and continuing down the certain path of conventional treatments promises only more misery and maybe even death for Preston. So Ana has chosen uncertainty in the form of this amber oil created in a Boulder County garage.
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It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
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