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“Time to get up, Boo-Boo,” Ana said to him. “Come on.”
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“It’s OK,” Milly whispered again. “It’s OK.”
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
“Silly mommy,” he says to Ana, as she snuggles into a single hospital bed with him.
“You were being a big, mean shark. It’s OK.”
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“It smells like marijuana,” she laughed. “I didn’t think it would.”
Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
Ana’s reply is quiet.
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Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.
Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.
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Related: Every patient’s Dravet syndrome is a little different
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