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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.
In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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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.
“Colorado represents hope at this point,” she said. “This is the state of hope.”
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Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.
The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.
“Yes, that’s what we got with that,” Ana says.
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April 13 Ana Watson gets her first look at CBD oil at Jason Cranford’s grow operation in Boulder. Ana visited Colorado ahead of moving her family from North Carolina to change her residency and apply for a medical marijuana red card for Preston.
She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
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Charlotte Dravet’s message to parents is simple: Don’t move.
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Including the new Children’s study, the nine studies or surveys looking at whether CBD controls seizures in humans form a scientific crazy quilt.
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