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July 12 Preston watches as Ana and her mother, Milly Raynor, argue over how to administer the CBD oil after Preston spit out their first attempt at giving it to him orally. Milly will not let the argument end, and in the tension of the moment Ana asks, “Why did we even come down here? He needs to take it.”
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When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
CBD — or cannabidiol, as it’s known scientifically — is one of dozens of compounds in marijuana called cannabinoids. The compounds work by plugging into receptors on nerve cells, although much of their activity is still unclear. Tetrahydrocannabinol, or THC, is the most famous cannabinoid found in marijuana. But, unlike THC, CBD does not get users stoned.
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Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
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.
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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.
“Is that the one that causes the rash?” Ana asks.
A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
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The neurologists were baffled and kept hunting for new medicines.
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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Ketogenic diet, the doctor asks?
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Sydney tries to get Preston to drink some sweet tea
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