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That’s why Ana moved her family across the country to Colorado, where Preston could try a treatment that’s not on the doctor’s list. Three days before the doctor’s appointment in mid-July, Ana gave Preston his first dose of an unregulated medical marijuana extract that is high in a compound called CBD. Hundreds of families like Ana’s have moved to Colorado for the treatment, hoping it will calm their children’s seizures.
Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
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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.
Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.
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“Beautiful,” another wrote. “So beautiful.”
Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.
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Supporters of the CBD treatment say Children’s sample was skewed because the hospital might not be seeing the kids doing best on medical marijuana. State health officials have recommended that Children’s receive nearly $1 million in grants for further research.
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Graphic: Inside look at Preston’s fight
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The results swing wildly. The studies show anywhere from 30 to 80 percent of children seeing a significant seizure reduction while on CBD. And now even some doctors involved in the research question the findings.
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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Although he owns a medical marijuana store and several licensed cultivation warehouses, Cranford provides CBD to young patients out of his home under the state’s less-stringent regulations for medical marijuana caregivers. He says it keeps the cost down for patients and also creates a more personal atmosphere.
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HempMedPX is creating hemp oil rich in CBD or cannabidiol. Unlike THC in marijuana, CBD does not cause the “high” effect. Rather, recent studies indicate “CBD to be well tolerated and safe” and is being tested to treat children with uncontrolled seizures.
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