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Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his tra***ional medications, both of which Ana tried to hide in Preston’s food or sweet tea.
Ana’s reply is quiet.
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July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
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Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.
How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.
The toy was a Slip ‘N Slide, on which he and his sister, Sydney, were supposed to be shooting across the tarp and under an inflatable shark’s mouth that held a spraying hose. Instead, Preston grabbed the hose and became the shark.
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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.
Ana Watson has decided to try adding THC
While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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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.
Preston helps “Paw Paw” Don Raynor
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Inside Children’s Hospital Colorado, Ana Watson stares across the small exam room at the woman in a white lab coat
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Mapping Preston’s seizures
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