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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
Preston rides and controls a scooter
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July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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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.
There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.
Poceta says in extreme cases, it may be reasonable for patients to consider trying CBD after consulting their doctor.
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Graphic: Inside look at Preston’s fight
Is this finally it?
Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.
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Ana gives Preston his CBD oil
“You were being a big, mean shark. It’s OK.”
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May 29 Krista Ranken cuts shoots in order to clone plants in their vegetative state. The Stanley brothers have specialized in breeding high-CBD strains of cannabis, including Charlotte’s Web, for Colorado Realm of Caring patients.
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Preston’s legs folded under him, and he crashed hard to the ground. Milly burst from her chair and ran over to him, reaching him in time to see his eyes roll toward his brows. And then, lying there in the grass he had soaked, Preston began to shake violently.
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