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“It’s OK,” she whispers. “It’s OK, Boo-Boo.”
“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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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.
July 12 Preston watches as Ana and her mother, Milly Raynor, argue over how to administer the CBD oil after Preston spit out their first attempt at giving it to him orally. Milly will not let the argument end, and in the tension of the moment Ana asks, “Why did we even come down here? He needs to take it.”
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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.
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To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.
“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
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“We don’t make recommendations”
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May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
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