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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.
Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
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So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.
In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
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“Keppra often causes behavioral issues,” the doctor responds.
On Apr. 11, 2014, Gov. Steve Beshear signed SB 124 into law, making Kentucky the third state to legalize CBD oil. On Mar. 12, Kentucky's Senate unanimously approved the bill, sponsored by Republican Sen. Julie Denton. On Mar, 26, the House did the same. The new law alows the University of Kentucky and University of Louisville med schools to conduct research into CBD oil and provide it to patients enrolled in the trial program.
He leans in to give her a kiss on the cheek. A maroon line on the computer screen jumps to life.
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This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.
It sunds so much better than calling it an ordeal.
“Paw Paw” Don Raynor
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April 13 Jessica Raynor, Preston’s aunt, reads him a bedtime story during a trip to Colorado Springs ahead of the family move. Ana, Jessica and Preston made the trip to Colorado to apply for Preston’s medical marijuana card.
No child in Colorado currently takes pure CBD. Instead, think of a marijuana plant like a chunk of gold ore. Only a tiny part of it is valuable; the rest needs to be refined away. To do this, CBD producers grow marijuana plants that are high in CBD and then use a solvent to dissolve the cannabinoids off the harvested plant material. The resulting slurry has the same cannabinoid makeup of the plant it came from. Depending on the method, the solvent may be evaporated away and the rest is diluted into oil.
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August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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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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