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An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
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Ana Watson watches as Preston gets his first dose
A spectrum of illnesses afflict the children coming to Colorado for medical marijuana: cancer, autism, Crohn’s disease. Most, though, are seeking help for incurable forms of childhood epilepsy — diseases with names taken from medical-journal bylines: Dravet syndrome, Lennox-Gastaut syndrome and Doose syndrome.
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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.
But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
April 15 Ana Watson keeps a sharp eye as Preston goes into a grand mal seizure on the frontage road near Castle Rock on Interstate 25 on their way from Colorado Springs to see Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for a medical marijuana red card for Preson.
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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.
“OK,” Ana says as she fills the capsules. “It’s not going to be pretty.”
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“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”
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Preston’s breaths grew quieter.
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August 5 Preston hides from his mom as she mixes his medications. He has started using THC with CBD and, aside from being playful with his mother, watched most of “Ghostbusters II.”
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