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Preston watches as Ana and her mother argue
“You were being a big, mean shark. It’s OK.”
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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.
“It smells like marijuana,” she laughed. “I didn’t think it would.”
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”
Preston resists his mother’s requests
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Keeping daydreams in check
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.
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“Seizures all of the time”
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
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“There is at least one basic science study that suggests CBD could be an effective anticonvulsant,” he said. “It has some promise, but at this point, unfortunately, it's not well studied enough to understand side effects and the long term benefits ratio of using this.”
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