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September 17 Preston helps “Paw Paw” Don Raynor tighten gates on the stairs during his grandfather’s visit from North Carolina to bring wife Milly her car. Milly has moved into her own apartment to relieve some of the tension that can arise between her and Ana. She plans to live in Colorado as long as her daughter and the children are here.
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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.
Over the fireplace hung a photo of Preston in a straw cowboy hat. He’s shirtless, leaning onto his left elbow. His mouth is closed and his eyes set in a stoic glare, and he appears startlingly mature — a boy trying to look like a man trying to look like a rock star.
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“BAM!” Ana writes on Facebook. “Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!”
Preston’s journey
One of approximately 70 cannabinoids found in cannabis, CBD (or cannabidiol) is non-toxic and non-intoxicating. Also of great importance, CBD has been shown to be an anti-oxidant, an anxiolytic (to have anti-anxiety effects), an anti-carcinogen (to have anti-cancer effects), an anti-psychotic, an anti-convulsive, an anti-spasmodic, and is also able to reduce seizures and reduce the effects of spasticity.
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Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.
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.
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.
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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.
While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
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And so this was the logical next step. A leap into the unknown.
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