Eating cream, mayo, sausage helps Bellevue teen limit seizures

Kathleen Harnden and daughter K.C., 15, talk about the high-fat, ketogenic diet that K.C. has been on for five years. Heavy whipping cream, sausage links and tofu noodles are just some of the staples in the diet, which requires careful measurement and constant testing.

A diet hinging month after month on cream, mayonnaise, bacon and sausage would compel many people to gag.

It makes 15-year-old K.C. Harnden smile.

She has been on the diet about five years. The regimen has helped limit her epileptic seizures, turned her from a struggling child to a typical kid, and given her mom great hope for K.C.'s future.

“It's very difficult to do,” her mother, Kathleen Harnden, said of the strict diet that emphasizes fat and minimizes carbohydrates and protein. “But for us, the results have been fantastic.”

Many neurologists recognize that the regimen — called the ketogenic diet — is effective for some patients who have no success with epilepsy medication. They don't know how it works.

Scientists at Creighton University are trying to figure out what it is about the high-fat diet that stops the brain flashes or excitation that cause seizures.

More broadly, a University of Calgary expert in the diet says, it shows that food intake can have a profound impact on the brain. It appears that “you become what you eat,” said the expert, Dr. Jong Rho, who has written widely about the ketogenic diet. Scientists now are studying whether the diet might benefit patients with Alzheimer's disease, Parkinson's disease and other conditions affecting the brain.

Creighton scientist Kristina Simeone, an assistant professor of pharmacology, suspects that patients with epilepsy have low levels of a chemical called adenosine in the brain. Adenosine helps quiet the brain.

Simeone has a $1.5million National Institutes of Health grant to examine whether adenosine is reduced in mice with epilepsy and whether the ketogenic diet increases adenosine in mice. Her husband, Tim Simeone, also conducts research into the ketogenic diet as a Creighton faculty member.

What is certain is that thousands of patients, most of them children, experience fewer seizures when they are on the diet. “Nobody knows why,” Kristina Simeone said.

“It works,” said Dr. Deepak Madhavan, director of the Comprehensive Epilepsy Program at the Nebraska Medical Center. Madhavan has three patients on the diet, including K.C., a Bellevue West High School freshman.

As a baby, K.C. never crawled normally, and as a toddler, she spent long periods rocking back and forth. As a girl, she couldn't figure out how to ride a bicycle without training wheels. She also suffered stomach pain and a had a hard time gaining weight. She struggled in many ways, some of which were attributed to kidney disease.

K.C. began having extended periods of vomiting and times when her eyes would go blank and she would be unresponsive. About eight years ago, she had a seizure in which she fell to the floor, her throat swelled and she foamed at the mouth. Ultimately, she was diagnosed as having an epilepsy syndrome.

Epilepsy drugs didn't work against her seizures, which she endured at least several times a week. A doctor at the Washington University School of Medicine in St. Louis put her on the ketogenic diet, and K.C. immediately improved.

K.C. now uses the diet in conjunction with a medication. It's hard to stay on the diet because the portions are small and the diet isn't especially appealing. K.C. can't have a slice of bread. A pizza for K.C. is a few pieces of pepperoni with mozzarella on them. A snack is some macadamia nuts. She can eat very little chocolate. She can have some carrot sticks and a few ounces of salad. The staples of her diet are cream and mayo.

Meals are often weighed, although her mother has become adept at eyeballing portions. K.C. aims to eat three parts fat for every one part of protein and carbohydrates combined.

“It's super, super rigid,” her mother said.

K.C. sniffs cake and potato chips but can't eat them. She knows how disciplined she must be. It's either stick to the diet or get sick. She has only about three seizures a year now, her mother said.

Around Christmas she couldn't resist devouring some chocolate cereal. She became nauseated and sleepy, suffered a headache, couldn't think straight and turned white.

Twice a day, K.C. measures her ketosis, the degree to which the body uses fat as a fuel source. If K.C.'s ketosis is at a good level, her urine turns a test stick a dark purple.

The diet has been around for many decades. Centuries ago, doctors noticed that fasting minimized seizures in some patients. Eventually they understood that when fasting, a person's body uses fat reserves. Doctors early last century sought to mimic that process by putting patients on high-fat diets.

Scientists invented many seizure medications later in the 20th century, and the diet was shelved. In time, though, it became clear that the drugs failed 30 percent of patients. Rho and others found that the ketogenic diet could help many of those patients, and now several thousand or more patients in the United States use it.

Most patients improve on the diet, and 10 percent to 20 percent become seizure-free, Rho said. Doctors strive after two or more years, as the brain matures, to wean them off the diet. Some then have success with an epilepsy medication, some need no further therapy and others remain on the diet.

“I am a big proponent of the diet,” said Dr. Charuta Joshi, director of the University of Iowa's pediatric epilepsy program. Joshi said she has 30 to 40 patients on the diet now. Joshi said it's more effective for certain kinds of epilepsy than others.

It's much harder for adults to comply than children, perhaps because adults have more developed palates and many children go along with the program if their parents require them to. In some cases, the children are toddlers or infants who are too young to comprehend the rigors of the diet.

“I wouldn't say that it is easy, but it can be done,” Joshi said.

At Johns Hopkins University in Maryland, one program prescribes the ketogenic diet to children struggling with epilepsy and another program prescribes a modified Atkins diet to adults. The modified Atkins diet is a less strict version of the ketogenic diet, said Dr. Mackenzie Cervenka, an assistant professor of neurology at Johns Hopkins.

“We're very enthusiastic about these treatments, and we're hoping they become more widely available to adults as well as children,” Cervenka said.

K.C. has her blood tested once a year for high cholesterol, liver function and other things. Doctors and scientists aren't sure how being on the diet for many years might affect the body. So far K.C.'s lab work has been excellent.

She plays hockey these days and does well in most subjects at school. She's less shy about her odd diet. She knows there are kids with tougher challenges than the ketogenic diet.

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