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“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
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July 12 Ana watches Preston fight off his first dose of CBD oil, being administered by a family friend who was visiting from North Carolina. The dose went into Preston'’s mouth, but he immediately spit it out.
In her hand, Ana holds the first dose of what she hopes will finally stop the seizures. More than a dozen medicines have already failed, and continuing down the certain path of conventional treatments promises only more misery and maybe even death for Preston. So Ana has chosen uncertainty in the form of this amber oil created in a Boulder County garage.
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He had 200 seizures Monday through Thursday, so bad he lost his swallowing reflex,” Lynch said. “I have 25 known drugs that he had to be put in a medically induced coma and these are all FDA approved and the side effects are just horrible.
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The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
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October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?
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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.
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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This time, she walks to him without a smile. She leads him into the bathroom and pulls down his diaper. She muscles him close.
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