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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.
There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
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The oil is not cheap. According to Charles Vest, the Vice President of Communications for HempMedPX, a week’s worth of their most potent oil cost about $400 to $500.
“Is that the one that causes the rash?” Ana asks.
Preston helps unload the trailer
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October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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Asked whether Preston would ever be able to speak a complete sentence, Greenwood’s eyes lit up with the idea, then quickly dimmed.
She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
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Seven months and 1,600 miles after their journey began, Ana has finally given Preston his first dose of marijuana.
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