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Preston resists his mother
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.
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Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.
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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.
Cibdol also tells a good story about the quality control of their CBD oil products, but they give very little insight into what this actually means. Cibdol claims that their product meets strict cannabinoid content guidelines but also gives no indication what this actually means.
May 11 As the furniture slowly empties from the house, Preston, complete with safety goggles and boots, plays carpenter in the dining room while whirling dervish little sister Sydney practices handstands and walkovers in the new space.
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In May 2014, Gov. Bill Haslam signed a bill that directs Tennessee Tech University to create a research program to study the efficacy of CBD oil used to prevent seizures, making Tennessee the sixth state to legalize CBD oil. The University is required to provide oil to other schools of medicine. All research must be completed by 2018.
Ana’s reply is quiet.
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“Silly mommy,” he says quietly.
When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
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It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
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It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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