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On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
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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November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
October 8 Andrew Tobey waits for Cody Morehead to catch up as they hang the drying poles during the Realm of Caring hemp harvest in eastern Colorado.
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“Seizures all of the time”
August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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But Preston watched rapturously, planting his elbows onto his knees and his head into his hands. His eyes are a deep walnut color and are framed by long eyelashes. Brown hair swirls atop his head in casual rebellion. His smile is all in the top lip, pulling up past his gum line to reveal a row of glimmering teeth.
Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?
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May 29 High-CBD strains of cannabis grow under natural light. The Stanley brothers have specialized in breeding cannabis, including Charlotte’s Web, that is intended as medicine for Colorado Realm of Caring patients.
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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Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?
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There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
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