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The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
NBC 7 spoke to Dr. Steven Poceta who is a neurologist at Scripps Clinic Torrey Pines and the president-elect of the San Diego County Medical Society. He says some patients with epilepsy are using CBD, and there is some suggestion that the component is effective.
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Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.
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 spits out his seizure medications
July 17 A nurse stops in for a quick check on Preston’s incisions and tube during his EEG while he is snuggling with his mother, Ana Watson, at Children’s Hospital in Aurora.
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No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
“That,” she breathed back in, “was pain.”
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Leafly lays out the legalese surrounding CBD products and how it thinks patients could avoid prosecution in the 28 medical marijuana states and DC. "The DEA cannot create a statute," a lawyer specializing in cannabis law tells Leafly.
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.
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On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
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By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.
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