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Public opinion through the years
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.
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She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
“An uncontrolled experiment”
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Doctors at Children’s Hospital Colorado recommend that kids with epilepsy get a baseline EEG before beginning CBD treatments. Doctors then ask patients to follow up with another EEG three or four months later to gauge if any changes have occurred. EEGs aren’t sensitive enough to pick up on all improvements — such as if a child begins using new words. But doctors believe it is a good way to measure big changes. “If your EEG is abnormal, it’s probably going to be pretty hard to be a good student,” said Dr. Kevin Chapman, a neurologist at Children’s.
April 13 Jessica Raynor, Preston’s aunt, reads him a bedtime story during a trip to Colorado Springs ahead of the family move. Ana, Jessica and Preston made the trip to Colorado to apply for Preston’s medical marijuana card.
“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
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On Apr. 17, 2014, Gov. Phil Bryant signed a bill named for two-year-old Harper Grace Durval, making Mississippi the fifth state to legalize CBD oil. The bill calls for the National Center for Natural Products Research in Oxford to produce the medicine.
But Preston watched rapturously, planting his elbows onto his knees and his head into his hands. His eyes are a deep walnut color and are framed by long eyelashes. Brown hair swirls atop his head in casual rebellion. His smile is all in the top lip, pulling up past his gum line to reveal a row of glimmering teeth.
May 29 Krista Ranken cuts shoots in order to clone plants in their vegetative state. The Stanley brothers have specialized in breeding high-CBD strains of cannabis, including Charlotte’s Web, for Colorado Realm of Caring patients.
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Parents hope to see progress
“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
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But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
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Graphic: Inside look at Preston’s fight
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