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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
She cracked it open and burst into giggles.
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The CBD oil she was using then was a roughly 35:1 mixture of CBD to THC. But Ana, concerned that she wasn’t using the best formulation, sought out the opinion of a Denver doctor who specializes in making medical marijuana recommendations. The doctor, Alan Shackelford, suggested Ana try a mix with more THC.
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.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
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Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
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However it is not just a matter of bureaucratic labeling. It is a question of life and death. Due to cannabis being scheduled this way it is almost impossible for medical research into cannabinoids to take place. The DEA has the power to prevent scientists from studying these compounds – and they have done just that. The DEA has systematically and ruthlessly prevented scientists from working with cannabinoids, and the consequences have been tragic.
But, to get a true starting level, the EEG meant Ana would need to take Preston off CBD temporarily. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days.
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October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
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Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
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