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Things are looking up at the RV park
He had 200 seizures Monday through Thursday, so bad he lost his swallowing reflex,” Lynch said. “I have 25 known drugs that he had to be put in a medically induced coma and these are all FDA approved and the side effects are just horrible.
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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
Preston and others take a first look at the plants
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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.
October 16 Preston rides and controls a scooter for the first time by himself in the open space in front of his home.
But the results were ultimately even less conclusive.
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Since then, she says he has had far fewer seizures and is able to sleep through the night.
June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
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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.
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