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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.
Step 3: Parents must fill out an application and get it notarized. The application includes a parental consent form that both parents must sign. Parents must submit a copy of the child’s birth certificate, and they must list themselves as their child’s medical marijuana caregiver.
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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.
But the results were ultimately even less conclusive.
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In a lab in Seattle, black mice twitch uncontrollably as they work their way through an electrified cage, furry little avatars of kids with Dravet syndrome...
“Then you need to up it,” Jason says.
“It smells like marijuana,” she laughed. “I didn’t think it would.”
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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.
Parents hope to see progress
The enormous differences between THC and CBD must be understood: one can hurt the brain, the other protects it. One can make you lazy, the other can make you more alert. One intoxicates you, the other leaves you clear-headed, one can cause anxiety, the other takes away anxiety, one can trigger psychosis in those predisposed to psychosis, the other is an anti-psychotic.
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“Silly mommy,” he says quietly.
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.
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At least two children and one woman across the country have died while their families prepared to move to Colorado for medical marijuana. One child who made it here died when the treatment didn’t help her con***ion enough. Her mother moved back home alone.
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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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