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Jessica Raynor reads Preston a bedtime story
Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
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“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
Preston spits out his seizure medications
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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Today, there are 427 children under 18 on the state’s medical marijuana registry, including 13 under 2 years old. That total number is up from just 60 in August 2013, when the documentary aired. More arrive every month.
This extraordinary different – opposite – set of reactions is critical in the understanding of cannabis. The media and the general public must e educated to the full picture, rather than the inaccurate caricature so often painted.
A plan is taking shape.
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At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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The doctor continues down the list of anti-epilepsy medications, collecting the medical history of Ana’s 12-year-old son, Preston, whose seizures cause such unrelenting brain damage that he functions at the level of a 2-year-old. The doctor ticks through 13 different medicines, but Preston has already tried each one, to little effect.
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“That would be really nice if he got that far,” he said, “but there’s not much evidence right now he’s moving toward that.”
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