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“It was fun, though, wasn’t it, Preston?”
It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.
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While Preston played later in the backyard August sunshine, his eyes seemed to roar.
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The neurologists were baffled and kept hunting for new medicines.
Dravet isn’t like other epilepsies.
For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.
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Dravet isn’t like other epilepsies.
Related: Every patient’s Dravet syndrome is a little different
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“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”
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Preson’s eyes slowly opened somewhere under the fluff of his mother’s comforter.
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