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Here is a sampling of the hundreds of studies undertaken to this point:
A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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May 8 Ana Watson has to keep a tight rein on her son, Preston, as they head off to school. “He is fearless,” she said. “He will walk straight off of the steps without looking down to see where he’s going.” Preston also acts totally on impulse “if he sees something he wants. Or if he gets a chance, he will run right after it — and he’s fast.”
At least two children and one woman across the country have died while their families prepared to move to Colorado for medical marijuana. One child who made it here died when the treatment didn’t help her con***ion enough. Her mother moved back home alone.
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“BAM!” Ana writes on Facebook. “Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!”
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?
While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
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June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.
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On May 1, 2014, the Missouri House (136-12) and Senate (unanimous) passed CBD-only leglislation.The bill directs the state's Department of Agricultiure to set up a system for non-profit applicants to produyce the oil under Health and Senior Services guidelines. Patients who suffer from seizures must prove that other treatment regimens have failed. On July 18, Gov. Jay Nixon signed the bill, making Missouri the 11th state to legalize CBD oil.
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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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
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Ana is trying a new way of giving Preston his oil
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