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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.
At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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Expand this story
Watch Dr. Kelly Knupp explains what doctors discover by examining Preston’s electroencephalogram.
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Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.
Pushing ahead
“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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“You were being a big, mean shark. It’s OK.”
Ana is trying a new way of giving Preston his oil
At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
Preston hides from his mom
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Consider how many people have died from cancer in the last 40 years. Now take a look at the National Cancer Institute website.
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April 13 Ana Watson gets her first look at CBD oil at Jason Cranford’s grow operation in Boulder. Ana visited Colorado ahead of moving her family from North Carolina to change her residency and apply for a medical marijuana red card for Preston.
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