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Jessica Raynor reads Preston a bedtime story
Preston’s grandmother supports his head
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Ana gives Preston his CBD oil
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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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.
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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Schedule 1 drugs (which are illegal and include LSD and heroin) are said to have "no currently accepted medical use and a high potential for abuse." The announcement published in the Federal Register last week details the new ruling for CBD, which sets aside a new code number for "marihuana extract" and pertains to any "extract containing one or more cannabinoids ... derived from any plant of the genus Cannabis." This decision came despite the fact that CBD from hemp—cannabis with no more than between 0.3% and 1% of the active ingredient THC—has been widely available up till now via mail order and the internet.
But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.
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Preston hides from his mom
Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
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“It smells like marijuana,” she laughed. “I didn’t think it would.”
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“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
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