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Preston’s at-home nurse Sheila Wall
Don Raynor holds Preston’s mouth closed and massages his throat
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Mapping Preston’s seizures
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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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Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.
It’s not just that parents are taking a gamble by moving to Colorado. It’s that they don’t even know the odds.
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Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
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Ana Watson looks across the living room of the Colorado Springs house that still doesn’t feel quite like home and sees her son, Preston, sitting stiffly on a brand-new couch. His eyelids flutter, struggling against the seizures that have quaked through his brain every day since he was 3 months old.
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