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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
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Preston hides from his mom
October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
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May 11 As the furniture slowly empties from the house, Preston, complete with safety goggles and boots, plays carpenter in the dining room while whirling dervish little sister Sydney practices handstands and walkovers in the new space.
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Ana Watson watches as Preston gets his first dose
The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her.
Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.
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The CBD oil she was using then was a roughly 35:1 mixture of CBD to THC. But Ana, concerned that she wasn’t using the best formulation, sought out the opinion of a Denver doctor who specializes in making medical marijuana recommendations. The doctor, Alan Shackelford, suggested Ana try a mix with more THC.
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To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.
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July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
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