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Charlotte Dravet’s message to parents is simple: Don’t move.
But the results were ultimately even less conclusive.
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“Yes,” Ana sighs, “we’ve tried everything.”
Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
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“Have you tried Stiripentol?”
A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
August 5 Preston hides from his mom as she mixes his medications. He has started using THC with CBD and, aside from being playful with his mother, watched most of “Ghostbusters II.”
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July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures.
The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.
Pushing ahead
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“OK,” Ana says as she fills the capsules. “It’s not going to be pretty.”
Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
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September 15 Ana Watson gives Preston his CBD oil in the recovery room after getting his permanent feeding button in place at Children’s Hospital in Aurora.
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This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.
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