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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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Preston plays carpenter in the dining room
Preson’s eyes slowly opened somewhere under the fluff of his mother’s comforter.
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Turn the page, and there’s a picture of Preston in a white onesie. Then a picture of Preston sitting in a kid-sized Jeep.
Preson’s eyes slowly opened somewhere under the fluff of his mother’s comforter.
“Yes,” Ana sighs, “we’ve tried everything.”
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Colorado has a special process for kids to be registered as medical marijuana patients under state law. These are the steps:
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Preston’s at-home nurse Sheila Wall
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It sunds so much better than calling it an ordeal.
The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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“Seizures all of the time”
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But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
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