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“I can’t be the parent who didn’t try,” said Janea Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.
The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
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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.”
October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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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.
“But they don’t seem to me to be as long,” Ana said.
“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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“It’s tested not only for the THC and CBD levels, it’s tested for pesticides, pathogens, anything that could be really harmful to the consumer,” Hartsel said. “We produce CBD on a large scale. Right now, no one is doing that."
A leap into the unknown
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That’s why Ana moved her family across the country to Colorado, where Preston could try a treatment that’s not on the doctor’s list. Three days before the doctor’s appointment in mid-July, Ana gave Preston his first dose of an unregulated medical marijuana extract that is high in a compound called CBD. Hundreds of families like Ana’s have moved to Colorado for the treatment, hoping it will calm their children’s seizures.
“Open up,” Ana coos.
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“Seizures all of the time”
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She turns toward Preston, and, as if he senses the tension, the cringe on his face pivots into an awkward smile. He starts to laugh, and she does, too.
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