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Parents hope to see progress
CBD — or cannabidiol, as it’s known scientifically — is one of dozens of compounds in marijuana called cannabinoids. The compounds work by plugging into receptors on nerve cells, although much of their activity is still unclear. Tetrahydrocannabinol, or THC, is the most famous cannabinoid found in marijuana. But, unlike THC, CBD does not get users stoned.
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She cracked it open and burst into giggles.
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
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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.
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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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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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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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Charlotte Dravet’s message to parents is simple: Don’t move.
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