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But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.
“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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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.
Ana gets a firsthand view of the trimming and drying process
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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
The doctors relied on parents to report how much CBD reduced seizures. And that opened the door for the study’s two most intriguing findings.
“He needs to learn to take it!” Ana says.
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Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his tra***ional medications, both of which Ana tried to hide in Preston’s food or sweet tea.
The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
“Colorado represents hope at this point,” she said. “This is the state of hope.”
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No child in Colorado currently takes pure CBD. Instead, think of a marijuana plant like a chunk of gold ore. Only a tiny part of it is valuable; the rest needs to be refined away. To do this, CBD producers grow marijuana plants that are high in CBD and then use a solvent to dissolve the cannabinoids off the harvested plant material. The resulting slurry has the same cannabinoid makeup of the plant it came from. Depending on the method, the solvent may be evaporated away and the rest is diluted into oil.
The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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“I know!” Ana pleads. “I’m sorry!”
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