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Charlotte Dravet’s message to parents is simple: Don’t move.
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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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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Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.
“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
Poceta says in extreme cases, it may be reasonable for patients to consider trying CBD after consulting their doctor.
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So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.
Ana Watson watches as Preston gets his first dose
July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
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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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Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
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July 1 Things are looking up at the RV park. Ana has found a house she wants to rent, and Preston found a computer chair he likes set out for free near the trash bin. Preston kept “Paw Paw” spinning him until he could spin no more.
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