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“Yes,” Ana sighs, “we’ve tried everything.”
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“Oma” — Preston’s grandmother Milly Raynor
“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
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May 9 Preston’s at-home nurse Sheila Wall keeps watch after a sudden cloudburst while picking strawberries. Excitement and the quick drop in temperature brought on almost nonstop myoclonic seizures that Preston’s mother, Ana, fears may turn into a full grand mal seizure before they get home.
“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”
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July 9 Preston, his mother, Ana Watson, sister Sydney Watson and grower Jason Cranford take a first look at the plants, named “Haleigh’s Hope,” that will provide the oil for an attempt to control Preston’s seizures. “This is the plant that is going to help Preston,” Ana said.
So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.
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“That,” she breathed back in, “was pain.”
On May 1, 2014, the Missouri House (136-12) and Senate (unanimous) passed CBD-only leglislation.The bill directs the state's Department of Agricultiure to set up a system for non-profit applicants to produyce the oil under Health and Senior Services guidelines. Patients who suffer from seizures must prove that other treatment regimens have failed. On July 18, Gov. Jay Nixon signed the bill, making Missouri the 11th state to legalize CBD oil.
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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.
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A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
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