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July 12 Ana watches Preston fight off his first dose of CBD oil, being administered by a family friend who was visiting from North Carolina. The dose went into Preston'’s mouth, but he immediately spit it out.
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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
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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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Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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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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