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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.
Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
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Physicians assistant Tom Dishion talks to Ana
September 3 Ana is trying a new way of giving Preston his oil. She is giving him straight THC by mouth separately from the CBD oil she gives him in his feeding tube. He hated it. She squirted it in and he started spitting and sputtering as soon as he tasted it. She ended up mixing it with formula and using his feeding tube. By using the oil separately she can figure his dosing ratios for tighter control.
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“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.
April 15 Ana Watson meets with Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for her medical marijuana red card to use the CBD oil to try to control the seizures her son, Preston, suffers because of Dravet syndrome.
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A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?
They look at different forms of epilepsy, different kinds of seizures and different measurements of success. At least five different types of CBD-rich marijuana therapies are represented in the studies.
Ana is tight beside Preston
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The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
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After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
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