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Preston’s baby book begins with pictures from a sonogram.
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.
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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
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Kids using CBD don’t smoke it. Instead, it comes infused into a cooking oil, like olive or safflower oil. Typically, parents are told to squirt the oil under their children’s tongues. But some families mix it in food or give it through a feeding tube.
Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
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Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
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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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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’?”
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