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August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
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Charlotte Dravet’s message to parents is simple: Don’t move.
Preston concentrates on popping bubbles
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May 12 Preston spits out his seizure medications, which were mixed with sweet tea. He took the first few squirts easily, but as more of the undissolved pills filled the syringe, the taste and texture became much worse. Preston’s meds have been masked in everything imaginable — sweets, ice cream, whipped cream, ranch dressing — which he eats on almost everything. But all attempts are less and less effective.
“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
July 12 Ana Watson measures 0.5mg per pound of body weight for Preston’s first dose of “Haleigh’s Hope,” a high-CBD oil she has been pinning her hopes on to help control his seizures and change his life.
The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.
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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.
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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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She turns toward Preston, and, as if he senses the tension, the cringe on his face pivots into an awkward smile. He starts to laugh, and she does, too.
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