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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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As the namesake for the severe form of epilepsy that afflicts many children arriving in Colorado for medical marijuana treatment, Dravet said parents often ask her about whether moving to Colorado is worth it. She tells them to wait...
A family photograph of Preston as a baby.
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“Wha doin’?” he shouted between seizures, because he didn’t know what it meant for the movers to be there.
July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
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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.
Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.
Preston has been eyeing his sister’s bike
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“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.
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“It smells like marijuana,” she laughed. “I didn’t think it would.”
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Ana takes the family to the shore
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