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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.
The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.
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“Tried it,” Ana says.
On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
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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.
Keeping daydreams in check
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?
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Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
At least two children and one woman across the country have died while their families prepared to move to Colorado for medical marijuana. One child who made it here died when the treatment didn’t help her con***ion enough. Her mother moved back home alone.
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June 27 Ana Watson holds her son, Preston. He wants to look out the big window and see the miles go by in their new state but is being hit by clusters of myoclonic seizures.
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There are times, Ana said, when she can almost see what Preston could become if the seizures would just let him.
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His muscles relaxed.
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