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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
Public opinion through the years
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Inside Children’s Hospital Colorado, Ana Watson stares across the small exam room at the woman in a white lab coat
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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The journey would be harder and more complicated than she ever imagined.
But, to get a true starting level, the EEG meant Ana would need to take Preston off CBD temporarily. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days.
July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
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Ana takes the family to the shore
“Is that the one that causes the rash?” Ana asks.
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.
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June 22 Preston is in all his glory with his grandfather, “Paw Paw” Don Raynor, for his last ride on the Grasshopper in North Carolina before the move to Colorado. Preston’s family wants to try CBD oil to control his seizures.
“It’s a boy!” the sticker on the page proclaims.
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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
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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.
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