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Dravet isn’t like other epilepsies.
Preston rides and controls a scooter
Ana Watson measures Preston’s first dose
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HB 885, CBD oil legislation known as Haleigh's Hope Act (named for four-year-old Haleigh Cox), failed to receive a Senate vote after sailing through Georgia's House on Mar. 4, 2014. However, in May, Gov. Nathan Deal signed an executiuve order calling for a study. The British firm GW Pharmaceuticals and Georgia Regents University are collaborating on the research. The legislation was reintroduced for the 2015 session. The House passed it on Mar, 25, 2015. The bill covers eightt conditions, including seizures, cancer, MS, ALS, sickle cell and mitchondria. Gov. Deal signed the bill into law on Apr. 16, making Georgia the 13th state to legalize CBD oil.
“You were being a big, mean shark. It’s OK.”
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.
“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.”
Preston’s grandmother supports his head
“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
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.
The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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