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“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”
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Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
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“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
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Doctors at Children’s Hospital Colorado recommend that kids with epilepsy get a baseline EEG before beginning CBD treatments. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. EEGs aren’t sensitive enough to pick up on all improvements — such as if a child begins using new words. But doctors believe it is a good way to measure big changes. “If your EEG is abnormal, it’s probably going to be pretty hard to be a good student,” said Dr. Kevin Chapman, a neurologist at Children’s.
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“I thought it went really well,” she says.
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