Stopping the seizures
How an unusual diet helped quell the storm in Bronson Roth’s brain
By Laura Mize
Bronson Roth’s seizures began the moment he was born.
The result of a brain injury at birth, they wracked his body with dramatic, uncontrollable movements. Medications kept the seizures at bay until he underwent surgery to implant a feeding tube about six months after birth.
“Literally, when he opened his eyes from that surgery, he started seizing,” said his mother, Tricia Roth. “He had 150 seizures a day from that point on, for an entire year.”
Desperate to help her son, Roth took him to three different hospitals before she heard about Edgard Andrade, M.D., and his work with pediatric neurology patients at Shands at UF. She made an appointment, already knowing what she wanted the doctor to prescribe: a treatment known as the ketogenic diet.
“My husband and I had decided before we even went and had an appointment with Dr. Andrade, that that’s what we wanted,” she said. “There were no more drugs they could try. He had already been to that point.”
Andrade agreed Bronson should try the diet and, alarmed at the number of seizures the boy was suffering, put him on the fast track to start the treatment. Also known as ketogenic therapy, the diet emphasizes fat intake and is very precise: It’s measured down to the tenth of a gram.
“The ketogenic diet works on ratios, so we start them off on like a three-to-one ratio … three grams of fat for every gram of protein plus carbohydrate,” explained Kate Kisilewicz, M.S., R.D., a pediatric dietitian who works with Andrade. “We normally keep them between three-to-one and four-to-one.”
Perhaps because of its regimented nature and the potential side effects — namely kidney stones and nutritional imbalance — some parents are reluctant to try the diet.
“When we told (Andrade) that we wanted to go on the ketogenic diet, he was excited,” Roth said. “I guess not a lot of parents do it because it’s a lot of work. But I just said, ‘I’d rather work and have my son seizure-free than not work and watch him seize all day.’”
How does it work?
For some children with epilepsy, ketogenic therapy can reduce or stop their seizures. Others see no results, and the diet is generally thought to be ineffective for older children and adults.
Ketogenic therapy sends the body into a constant state of ketosis, in which it burns fat for fuel instead of carbohydrates. No one understands exactly how this helps epilepsy patients, or why it’s effective for some people but not others.
Peggy Borum, Ph.D., a professor with dual appointments in the College of Medicine’s department of pediatrics and the College of Agriculture and Life Sciences’ department of food science and human nutrition, heads a research program on the treatment.
She and her team are working to find answers to those questions, and to understand how the diet, with its limited nutrient variety, affects children’s growth. A team of student volunteers, called KetoGators, assist families participating in the research by answering questions about the diet, attending appointments with them and offering general support.
Scientists are exploring other uses for the ketogenic diet, including whether it could reverse kidney damage in diabetics, according to an article published online in April by the journal PLoS One. If the diet proves helpful for people with diabetes, it could prevent patients from needing dialysis.
For Bronson, now 3, the effects of the ketogenic diet have been obvious. In the two years since he began the treatment, his parents have watched his seizures steadily decline. Now, most days are free of the violent seizures that once dominated his life. Andrade has ordered another electroencephalogram, or EEG, to check for silent seizures, which are less obvious.
The family continues to work with Kisilewicz to adjust Bronson’s “recipe” to suit his needs. Because he is fed through a tube, Bronson’s parents mix a special, no-carb formula with canola oil and two dietary supplements each morning, then load it into a pump that supplies the mixture to him throughout the day.
They consider the diet a success.
“The ketogenic diet worked for him,” Roth said. “That was our last option, so I’m glad that it actually worked. Because that was it for us.”