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October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.
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“He needs to learn to take it!” Ana says.
Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
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Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”
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“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”
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Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
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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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