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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.
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.
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An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
Legislation allowing for low-THC, CBD-rich marijuana oil has been approved for limited use in 14 states.
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July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
“It’s a boy!” the sticker on the page proclaims.
A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
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Was it working?
“We’ve tried it all”
After the movers left, Preston’s blinkies hit even worse. Drool dribbled off his chin and onto his T-shirt. Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking.
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Several states now allow some form of medical marijuana. Only two states — Colorado and Washington — allow recreational marijuana, but Alaska and Oregon will soon join their ranks.
The problem is, that while the CBD content can be much higher in cannabis-sourced CBD, the THC level can also be higher. This THC level creates a problem with legality, as THC is considered a dangerous substance which is prohibited in nearly every country. Growers are working hard to maximize the CBD level and minimize the THC level, but the reality is that this plant naturally contains THC, and whether or not man writes a law forbidding it, nature isn’t likely to pay much attention to that law.
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“BAM!” Ana writes on Facebook. “Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!”
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