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Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.
A family photograph of Preston as a baby
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However, CBD is considered more effective when it is processed from high CBD cannabis plants. The most famous strain at the moment is Charlotte’s Web, but ACDC, Harlequin and Cannatonic are also quickly growing in reputation.
July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
“BAM!” Ana writes on Facebook. “Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!”
“Why did we even come down here if he’s not going to take it!?” she snaps.
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The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.
Let’s say this company’s extract is only 30% phyto-cannabinoids by weight, then that product that has a label indicating it has 100MG of hemp extract only has 30MG of active phyto-cannabinoids in it. This happens a lot in this industry and buyers need to beware. Do your research. Ask for transparency.
“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
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The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.
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.
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Many companies mislead clients when it comes to phyto-cannabinoid dosing on their bottles. Our phyto-cannabinoid MG strength is reflective of the actual active phyto-cannabinoids in that particular product. If our bottle says 100MG of phyto-cannabinoids that products contains 100MG of actual active phyto-cannabinoids.
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But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
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