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“Have you tried Stiripentol?”
But the results were ultimately even less conclusive.
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Preston spits out his seizure medications
Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.
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“Have you tried Stiripentol?”
Preston concentrates on popping bubbles
“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”
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Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
July 12 Ana watches Preston fight off his first dose of CBD oil, being administered by a family friend who was visiting from North Carolina. The dose went into Preston'’s mouth, but he immediately spit it out.
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“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
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.
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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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