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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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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But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
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July 1 Don Raynor and daughter Ana Watson go over the real estate application for a house Ana wants to rent in Colorado Springs. Don reads everything very carefully: He is worried about Ana being so far from home and whether her income will cover everything she and the kids will need.
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October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
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“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
“I can’t be the parent who didn’t try,” said Janea Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.
July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
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But Ana’s jaw clenches.
On June 30, 2015, House bill 32 went into effect, making Wyoming the 16th state to legalize CBD oil. The state Department of Health is required to create hemp extract registration cards and a confidential data base. A neurologist must first determine whether the patient is qualified to use cannabidiol.
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July 16 “Oma,” Preston’s grandmother Milly, watches as nurses prepare him for surgery at Children’s Hospital in Aurora. For weeks he has not been eating well or getting his full amount of seizure medications. Preston went in for an appointment to meet his neurologist that turned into an operation for a gastrostomy tube and a 24-hour EEG. His mother, Ana Watson, had to stop giving him the CBD oil so they could get a good baseline EEG.
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“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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