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The neurologists were baffled and kept hunting for new medicines.
Pushing ahead
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A family photograph of Preston as a baby.
After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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That’s why Ana moved her family across the country to Colorado, where Preston could try a treatment that’s not on the doctor’s list. Three days before the doctor’s appointment in mid-July, Ana gave Preston his first dose of an unregulated medical marijuana extract that is high in a compound called CBD. Hundreds of families like Ana’s have moved to Colorado for the treatment, hoping it will calm their children’s seizures.
On Apr. 17, 2014, Gov. Phil Bryant signed a bill named for two-year-old Harper Grace Durval, making Mississippi the fifth state to legalize CBD oil. The bill calls for the National Center for Natural Products Research in Oxford to produce the medicine.
“I can’t be the parent who didn’t try,” said Janéa 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.
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But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
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.
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.
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Ana atson keeps a sharp eye
July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
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An Oceanside family, desperate to save their dying son, has turned to medical marijuana. They say marijuana oil has helped cure the seizures that almost took his life. NBC 7’s Omari Fleming reports. (Published Wednesday, Jan. 8, 2014)
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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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