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May 11 To make sure Preston doesn’t bolt, Ana is tight beside her son, who wears his cool-down vest. The vest keeps his core temperature even. Here, he fishes and teases Lexi with a bluegill they just caught on Mother’s Day. It is a beautiful day for their last visit to one of Preston’s favorite places in North Carolina — the “lodge” at the Piedmont Quail Club, which his grandfather manages.
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Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
In August, she learned online about CBD and obtained hemp oil from a friend of a friend. That oil happened to be high in THC and made Blake have more seizures. In search of a safe, consistent product, Lynch found HempMedPX. She put the CBD-rich hemp oil into a pill for Blake to ingest.
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Preston pulls back toward the lunchroom
Penn Mattison cuts down stubby round cannabis plants
May 29 Jon Stanley follows a carefully designed watering schedule for the cloned plants and the more mature high-CBD strains of cannabis in their vegetative state.
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He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.
May 11 To make sure Preston doesn’t bolt, Ana is tight beside her son, who wears his cool-down vest. The vest keeps his core temperature even. Here, he fishes and teases Lexi with a bluegill they just caught on Mother’s Day. It is a beautiful day for their last visit to one of Preston’s favorite places in North Carolina — the “lodge” at the Piedmont Quail Club, which his grandfather manages.
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But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.
A family photograph of Preston as a baby.
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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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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.
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