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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!”
July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
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 condition continue to inhibit their growth?
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
“It was fun, though, wasn’t it, Preston?”
October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
On Apr. 1, 2014, Gov. Robert Bentley signed Carly's Law, named for three-year-old Carly Chandler, making Alabama the second state to legalize CBD oil. On Mar. 11, Alabama's Senate voted unanimously in favor of SB 174. The bill, sponsored by Republican Sen. Paul Sanford, calls for the University of Alabama to conduct research into cannibidiol's efficacy in treating neurological conditions such as epilepsy. UAB would be able to prescribe the oil to approved patients. One million dollars has been allocated for the study.
“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
The neurologists were baffled and kept hunting for new medicines.
A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
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.
“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.”
On June 27, 2014 the state legislature passed CBD-oil bills (there was only on nay vote). The legislation calls for a trial study to be conducted by the state's top four universities - UNC, Duke, Wake Forest and East Carolina. Th primarry focus is making making the oil avaialble to youngsters who suffer from seizures. Neurologists are responsble for providing the medicine. Gov. Pat McCrory signed the bill into law into law on July 3, making North Carolina the 10th state to legalize CBD oil.
“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”
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.
Our mission is to provide a legal and safe alternative for those in need of phyto-cannabinoids. Our products made from our phyto-cannabinoid rich (PCR) hemp extract are identical to products available to patients in medical cannabis states (with the exclusion of being from industrial hemp and being non-psychoactive). Products made from our PCR hemp extracts are 100% THC free and legal in 49 states.
The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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