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“Wha doin’?” he shouted between seizures, because he didn’t know what it meant for the movers to be there.
October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
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No child in Colorado currently takes pure CBD. Instead, think of a marijuana plant like a chunk of gold ore. Only a tiny part of it is valuable; the rest needs to be refined away. To do this, CBD producers grow marijuana plants that are high in CBD and then use a solvent to dissolve the cannabinoids off the harvested plant material. The resulting slurry has the same cannabinoid makeup of the plant it came from. Depending on the method, the solvent may be evaporated away and the rest is diluted into oil.
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July 29 Preston meets Dr. Alan Shackelford at his office in Denver. He and his mother, Ana, are visiting the doctor for help with Preston’s dosing. Shackelford evaluated Preston’s physical con***ion, then went over his medical history with Ana and her mother to figure out a starting point to use the CBD oil.
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Ketogenic diet, the doctor asks?
Preston isn’t feeling well
November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
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Preston’s baby book begins with pictures from a sonogram.
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.
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He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.
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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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