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July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
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August 6 Preston’s grandmother, Milly Raynor, supports his head as she tries to untangle him from a hose he tripped over, and a seizure kicks in. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. A doctor’s appointment the next day reveals a broken bone in his foot.
“You were being a big, mean shark. It’s OK.”
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But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.
Ana and Preston head off to school
While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”
Ana Watson and nurse Chelle Bennett carry Preston
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“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
Related: Researchers bemoan roadblocks to medical marijuana research
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October 8 Jonathan Berkbigler of Colorado Springs loads a horse trailer to transport cannabis plants to the drying warehouse during the Realm of Caring harvest in eastern Colorado.
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May 29 High-CBD strains of cannabis grow under natural light. The Stanley brothers have specialized in breeding cannabis, including Charlotte’s Web, that is intended as medicine for Colorado Realm of Caring patients.
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