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Preston plays carpenter in the dining room
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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
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She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
“Why did we even come down here if he’s not going to take it!?” she snaps.
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He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.
Charlotte Dravet’s message to parents is simple: Don’t move.
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An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped.
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He leans in to give her a kiss on the cheek. A maroon line on the computer screen jumps to life.
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