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“It smells like marijuana,” she laughed. “I didn’t think it would.”
“We’ve tried it all”
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No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
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Preston starts singing.
Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
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Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.
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So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.
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There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
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