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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.
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Graphic: Mapping Preston’s seizures
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“We’ve tried it all”
Related: Every patient’s Dravet syndrome is a little different
After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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Ketogenic diet, the doctor asks?
Preston squeals. Once. Then again.
Charlotte Dravet’s message to parents is simple: Don’t move.
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Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his tra***ional medications, both of which Ana tried to hide in Preston’s food or sweet tea.
How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.
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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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October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
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