The special diet she was using on children with epilepsy was changing lives—but Beth Zupec-Kania (BS’81, dietetics) didn’t know it would change her own until she got a call from Hollywood producer Jim Abrahams back in the mid-1990s.
As a dietitian at Children’s Hospital in Milwaukee, Zupec-Kania and her team had been using the ketogenic diet, a high-fat, low-carb diet—think Atkins—shown to greatly reduce or eliminate seizures. And writer/producer Abrahams (Airplane!, The Naked Gun), whose young son Charlie had been saved by the diet, wanted to partner with her to spread the word.
Charlie had begun having seizures at 12 months, and after going through a half-dozen medications and brain surgery still was having up to 200 seizures a day. “He lived in a car seat,” says Zupec-Kania. “It was the only safe place they could put him because he would have a seizure and just collapse.”
Through his own research Abrahams learned about the diet and took Charlie for treatment at Johns Hopkins, one of relatively few hospitals that offered it. Almost immediately the boy stopped seizing and after a few years was weaned off the diet.
Abrahams formed The Charlie Foundation to promote access to the diet and soon heard that Children’s Hospital in his native Milwaukee had been another early adopter. Abrahams reached out to Zupec-Kania and her team to help them scale up use and start training physicians, nurses and dietitians at other hospitals.
Zupec-Kania found that work so rewarding that eventually she joined The Charlie Foundation full-time, where she writes journal articles and develops online support materials about the diet along with training healthcare professionals. Her work takes her all around the United States and much of the world, including Saudi Arabia (see photo), the Dominican Republic and Germany.
No one knows why this diet works or why it has permanent effects, right?
That’s right, no one knows why the diet affects seizures. But many scientists are trying to solve this mystery—they believe that a healing occurs in the brain. At UW–Madison, physician Carl Stafstrom has done research on this and he’s also treating patients with the diet.
Is the ketogenic diet just for kids?
No. We are finding it works in adults as well. The problem with adults is that compliance with any type of diet is difficult.
Why is the diet still not a treatment of first resort?
It’s much easier to prescribe a medication, and if clinicians are going to use the diet, they need to have a team in place—a neurologist, a nurse and a dietitian—to initiate and manage it. The diet is not started at home, it’s started in the hospital under medical supervision. Also, there isn’t a treatment code for the diet, so insurance reimbursement is really poor. That’s been a barrier as well.
When you first met Jim, did you feel at all starstruck?
I did! I remember sitting there when he called, thinking “Is this Hollywood producer really talking to me?” But the more I talked to him, the more he seemed like just a regular guy from Milwaukee because he has that familiar accent. He is the nicest man—the most warm, kind, caring person.
More information at charliefoundation.org.
This story was originally published in the Spring 2012 issue of Grow magazine.