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Legislation allowing the use of low-THC, CBD-rich marijuana oil primarily for children suffering from seizure disorders has been approved in ...

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Ana Watson blocks the door to keep Preston inside Instead, Preston turns his head side to side to avoid the dropper. Squirming on the couch next to his mother, he’s nearly as tall as she is. But hundreds of seizures a day have restrained his development to that of a 2-year-old. He is 12 years old, yet in many ways he’s a 70-pound toddler. On June 3, 2014, Gov. Andrew Cuomo announced that the state has entered into an agreement with GW Pharmaceuticals to investigate the efficacy of cannabidiol use by children suffering from the seizure disorders Dravet's syndrome and Lennox-Gastuat syndrome. The clinical trials will take place at hospitals, universities and medical colleges. GW is already working with NYU's Langone Medical Center on a trial involving 60 children and their CBD product, Epidiolex. New York passed a broader medical marijuana bill on June 20. An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped. She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency. When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge. The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her. “The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.” Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile. 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. 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. “It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.” July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures. Our pledge to you Step 3: Parents must fill out an application and get it notarized. The application includes a parental consent form that both parents must sign. Parents must submit a copy of the child’s birth certificate, and they must list themselves as their child’s medical marijuana caregiver. May 29 Jon Stanley follows a carefully designed watering schedule for the cloned plants and the more mature high-CBD strains of cannabis in their vegetative state. July 3 Preston tries his hardest to get this box into the family’s new home. Finally, he is able to help unload the trailer, which has held his complete attention as it followed his family across the country on the trip to Colorado. Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates. Part 3 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.
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