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Related: Epilepsy drug development is a sparse field
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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“It’s been a constant struggle of trying to limit the number of seizures he has,” Greenwood said of Preston, who at age 1 started as a patient of Greenwood’s. “We have tried literally everything.”
Focusing on ‘Natural’ is an important distinction because of the emergence of laboratory made synthetic CBD molecules coming to market. Hemp Meds is focused on creating the highest quality consumer products featuring premium cannabidiol (CBD) hemp oil.
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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.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
August 8 Milly supports Preston’s head, trying to calm Preston as he comes out of a grand mal seizure. Preston was playing with a water slide in the back yard when he fell and began to seize. A doctor’s appointment the next day reveals a broken bone in his foot.
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“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
She checked her phone for online answers. Finally, eager to move on, she set the phone down.
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The CBD rush to Colorado is a movement that divides patients from doctors.
Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
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A family photograph of Preston as a baby
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Asked whether Preston would ever be able to speak a complete sentence, Greenwood’s eyes lit up with the idea, then quickly dimmed.
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