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The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.
Companies selling it have been operating under assumed legality because of CBD's low THC levels, Leafly notes—an apparently murky area. The DEA made a similar move in 2001 when it failed in an attempt to ban all hemp products.
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July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
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Preston’s at-home nurse Sheila Wall
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The enormous differences between THC and CBD must be understood: one can hurt the brain, the other protects it. One can make you lazy, the other can make you more alert. One intoxicates you, the other leaves you clear-headed, one can cause anxiety, the other takes away anxiety, one can trigger psychosis in those predisposed to psychosis, the other is an anti-psychotic.
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It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.
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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.”
May 29 Clones of high-CBD strains of cannabis, including plants intended for use in making Charlotte’s Web, sit under lights at a growing facility in eastern Colorado.
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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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July 9 Ana Watson finally is able to get CBD oil for Preston. The journey hasn’t been without frustration. She has had to fill out many forms and file a change-of-patient record for the medical marijuana registry. She now is overwhelmed with worries: how much to buy and when; how strong it will be; how much to give Preston; whether to add THC.
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