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Preston plays carpenter in the dining room
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But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.
She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
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Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.
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“Silly Preston,” she says back.
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In August, she learned online about CBD and obtained hemp oil from a friend of a friend. That oil happened to be high in THC and made Blake have more seizures. In search of a safe, consistent product, Lynch found HempMedPX. She put the CBD-rich hemp oil into a pill for Blake to ingest.
“It’s been a constant struggle of trying to limit the number of seizures he has,” Greenwood said of Preston, who at age 1 started as a patient of Greenwood’s. “We have tried literally everything.”
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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.
July 24 Preston gently touches his friend Hailey McGuire as she rests at his home. Hailey, Tami King’s daughter, also has Dravet syndrome. King had stopped at Watson’s home for the comfort of a friend after a doctor’s visit at which Hailey had her seventh grand mal seizure since 2 a.m. and is “still in seizure mode” as Tami calls it. There is a connection between Dravet mothers, but there also seems to be a deep understanding between Dravet kids.
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“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
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Preston meets Dr. Alan Shackelford
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