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Ana returned to the kitchen and shakily exhaled.
Preston is in all his glory
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Preston is talking.
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“Keppra often causes behavioral issues,” the doctor responds.
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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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
Horticulturist Penn Mattison
He grew reluctant to eat or drink, which left him not only weak but also not getting the right dose of conventional medicine hidden in his food. The day the movers arrived, Preston sat on the grass holding his grandmother’s hand while the blinkies attacked.
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Since then, she says he has had far fewer seizures and is able to sleep through the night.
“Yes,” Ana sighs, “we’ve tried everything.”
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The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
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“AWESOME!!” one wrote beneath the video of Preston singing.
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