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July 3 Preston tries his hardest to get this box into the family’s new home. Finally, he is able to help unload the trailer, which has held his complete attention as it followed his family across the country on the trip to Colorado.
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.
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She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
“But they don’t seem to me to be as long,” Ana said.
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“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.
Preston’s baby book begins with pictures from a sonogram.
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Although he owns a medical marijuana store and several licensed cultivation warehouses, Cranford provides CBD to young patients out of his home under the state’s less-stringent regulations for medical marijuana caregivers. He says it keeps the cost down for patients and also creates a more personal atmosphere.
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In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.
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Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”
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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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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.
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