Nick and Michelle Skimas, of Vancouver, Wash., enrolled their daughter Julia in the study in April 2007. Julia stopped having seizures after starting medication.
Before diagnosis and treatment, Julia, now 8, would stop abruptly while reading aloud, pause for 10 to 15 seconds, then resume where she left off, not aware that anything had occurred. Michelle assumed Julia was just taking breaks to look at the pictures.
This went on for two to three weeks, and Michelle didn't think anything of it. Then, while on a family vacation, Julia suddenly stopped in the midst of pitching a baseball and began slowly turning in a circle. Julia was unaware of what was happening and had no recollection of what had occurred.
"That did it," said Michelle. "We took Julia to be evaluated as soon as we got back." After an EEG, and an MRI to rule out a brain tumor, Julia was diagnosed with childhood absence epilepsy. Her primary care physician recommended she enroll in a new drug trial at OHSU Doernbecher. Nick and Michelle were leery of giving their daughter medication, but Roberts and his team explained that without treatment Julia's seizures would have a serious impact on her learning and development.
"They said to think of Julia's brain as a classroom in which one child is continuously disruptive. The rest of the class can't function. It was a hard decision, but we are glad we participated. We feel blessed that she has been seizure-free for more than 2 years."
The national study group recommended long-term follow up for the study participants and recently received a five-year extension from the NIH.
Julia, who stopped taking the medication several months after she became seizure-free because it increased her BMI, or body mass index, continues to participate in the newly extended trial, representing one of three study groups: particip
|Contact: Tamara Hargens-Bradley|
Oregon Health & Science University