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    Bear in mind that the National Cancer Institute is part of the United States government’s own Department of Health. It is an extraordinary contradiction that while one department of government insists that cannabis has no medicinal uses another department is detailing the way cannabis kills cancer cells and shrinks tumors.
    At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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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.
    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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    They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
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    July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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