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May 29 Jon Stanley follows a carefully designed watering schedule for the cloned plants and the more mature high-CBD strains of cannabis in their vegetative state.
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.
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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome...
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Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
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On Apr. 7, 2015, the Idaho House approved a CBD oil bill by a close 39-30 vote. Named for 11-year-old epilepsy patient Alexis Carey, the legislation would allow parents to possess up to 32 fluid ounces of liquid cannabidiol (max 15% CBD and .03% THC) to administer to chilldren who suffer from seizure disorders. On Apr. 16, Gov. Butch Otter vetoed the bill. However, he says he'll issue an executive order requiring the state's Department of Health and Welfare to study the effects of CBD oil pn epilepsy; this may lead to accees to the oil for children. But Idaho at this point sode not qualify as a CBD-legal state.
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
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Ana is tight beside Preston
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