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The nation’s leading researchers and pharmaceutical representatives working on new treatments for epilepsy gathered at a conference this June in San Francisco. They fit in a medium-sized hotel meeting room...
May 7 Preston resists his mother’s gentle requests to get up as he curls up to his little sister, Sydney, 8. Ana Watson’s mornings quite often start with both of them in her bed at her North Carolina home.
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Mapping Preston’s seizures
July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
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“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’?”
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So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.
“Paw Paw” Don Raynor
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.
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“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
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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