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“Basically, we’ve tried it all,” Ana says. “That’s why we moved here for CBD. His doctors said we can’t go up in his meds anymore, and we were at a stopping point.” Jake Beckman splitting a plant stem But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices. 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. Related: Every patient’s Dravet syndrome is a little different “Colorado represents hope at this point,” she said. “This is the state of hope.” May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures. 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. Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here. A family photograph of Preston as a baby May 29 Jake Beckman concentrates on splitting a plant stem for cloning. The Stanley brothers have specialized in breeding high-CBD strains of cannabis, including Charlotte’s Web. 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. “What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’” Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here. 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? May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing. Ana Watson and her family moved from North Carolina to Colorado with the dream that medical marijuana would help her son, Preston, and stop his relentless seizures. Their journey was harder than they expected. The answers were more elusive than the happy anecdotes seemed to promise. But they kept pressing forward because they said they had no other choice. Because Colorado was the only hope they had left. “Silly mommy,” he says quietly. The neurologists were baffled and kept hunting for new medicines.
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