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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.
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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In her hand, Ana holds the first dose of what she hopes will finally stop the seizures. More than a dozen medicines have already failed, and continuing down the certain path of conventional treatments promises only more misery and maybe even death for Preston. So Ana has chosen uncertainty in the form of this amber oil created in a Boulder County garage.
October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
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May 29 High-CBD strains of cannabis grow under natural light. The Stanley brothers have specialized in breeding cannabis, including Charlotte’s Web, that is intended as medicine for Colorado Realm of Caring patients.
NBC 7 spoke to Dr. Steven Poceta who is a neurologist at Scripps Clinic Torrey Pines and the president-elect of the San Diego County Medical Society. He says some patients with epilepsy are using CBD, and there is some suggestion that the component is effective.
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Once begun, the morning ticked along with practiced precision. Ana made the fried potatoes Preston only ever wants for breakfast. Eight-year-old Sydney quietly dressed and got ready on her own, until it was time to ask mom to fix her ponytail.
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“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
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.
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But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.
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