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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.
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But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.
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.
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The doctors relied on parents to report how much CBD reduced seizures. And that opened the door for the study’s two most intriguing findings.
The journey would be harder and more complicated than she ever imagined.
An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.
“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
“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.”
But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.
An Oceanside family, desperate to save their dying son, has turned to medical marijuana. They say marijuana oil has helped cure the seizures that almost took his life. NBC 7’s Omari Fleming reports. (Published Wednesday, Jan. 8, 2014)
He had 200 seizures Monday through Thursday, so bad he lost his swallowing reflex,” Lynch said. “I have 25 known drugs that he had to be put in a medically induced coma and these are all FDA approved and the side effects are just horrible.
Related: Big pharmaceutical companies consider medical marijuana
Everyone in her family has their own vision of what Preston might be. Ana’s mom sees Preston getting a job at a park running a lawn mower. Ana’s dad — the man who taught Preston how to be a boy, to love mowers and tractors, and to shout, “Crank it!” — imagines playing catch with his grandson.
“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
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Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.
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