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Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”
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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.
But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
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June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
Jessica Raynor reads Preston a bedtime story
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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The migration began just over a year ago, when CNN aired a documentary featuring a Colorado girl named Charlotte Figi, whose constant seizures caused her to stop speaking for months. While taking a form of the marijuana treatment, the seizures subsided, and she bloomed anew into a happy child seen laughing and playing in video clips. News stories began reporting that other children were seeing similarly miraculous results. To parents of kids with severe disorders, the articles seemed almost out of a storybook. So it was fitting that the brothers who grew the marijuana for the kids named their product Charlotte’s Web.
May 29 Krista Ranken cuts shoots in order to clone plants in their vegetative state. The Stanley brothers have specialized in breeding high-CBD strains of cannabis, including Charlotte’s Web, for Colorado Realm of Caring patients.
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Sydney tries to get Preston to drink some sweet tea
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Charlotte Dravet’s message to parents is simple: Don’t move.
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