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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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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
“No. Not yet.”
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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.
The CBD oil she was using then was a roughly 35:1 mixture of CBD to THC. But Ana, concerned that she wasn’t using the best formulation, sought out the opinion of a Denver doctor who specializes in making medical marijuana recommendations. The doctor, Alan Shackelford, suggested Ana try a mix with more THC.
But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.
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The problem is, that while the CBD content can be much higher in cannabis-sourced CBD, the THC level can also be higher. This THC level creates a problem with legality, as THC is considered a dangerous substance which is prohibited in nearly every country. Growers are working hard to maximize the CBD level and minimize the THC level, but the reality is that this plant naturally contains THC, and whether or not man writes a law forbidding it, nature isn’t likely to pay much attention to that law.
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.
It’s not just that parents are taking a gamble by moving to Colorado. It’s that they don’t even know the odds.
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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.
October 7 Working to improve his hand-eye coordination, Preston concentrates on popping bubbles with one finger during occupational therapy at home with Kate Vovato, a therapist from MGA Home Healthcare.
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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.
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“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”
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