Kayla was in middle school when she went on the ketogenic diet to control her epileptic seizures. Concerned that eating high-fat foods required by the diet would make her uncomfortable in front of her classmates, Kayla would go to the nurse’s office before lunch to drink the heavy cream or avocado oil that was part of each meal before joining her friends back in the cafeteria.
But after a few months, Kayla decided to open up to her classmates. She chose epilepsy as the topic for her seventh-grade science project and picked the keto diet for her school science fair entry the following year.
“I really felt like I wanted to share what was going on with me,” says Kayla, now a high school sophomore who has been largely seizure-free, thanks to help from the Dietary Treatment Program team at Children’s Hospital of Philadelphia (CHOP). “Some of the kids were not very compassionate or understanding, but I decided not to let them get in the way.”
Help for seizures
Kayla was 10 years old when she was diagnosed with epilepsy. She remained conscious during focal seizures, but they left her disoriented and weak on the left side of her body. Some days, she would have hundreds of seizures.
After three years of trying different medications without success, Kayla faced a choice: She could try another medication or she could go on the ketogenic diet.
Kayla decided to go on the ketogenic diet, but she was concerned since she didn’t want to stand out as different from her classmates. She even considered home schooling.
“I was worried about what people were going to think. I have to bring my own food to school. I have to take oil all of the time,” Kayla remembers.
Kayla was gradually introduced to the diet during a five-day hospital stay, in which 75 percent of her calories came from fat. She was limited to 10 grams of carbohydrates per day. When the transition was complete and Kayla was back home, the hard work began.
Learning to follow the keto diet at home
Kayla’s parents used a gram scale to measure her portions. Her mother learned to make ketogenic granola bars and other snacks, carefully measuring out the size of each serving. Early on, she would send Kayla’s younger brother and sister into the basement to eat brownies and cookies, treats which Kayla could no longer enjoy.
It was a challenge to manage her daughter’s special diet while also feeding her two younger children. But the effort of meeting Kayla’s nutritional needs brought Molly and Kayla closer.
“It’s hard enough for working parents to get meals on the table for their families at a reasonable hour. This diet adds more complexity. So, it was a challenging process, but in a way it kind of bonded us together, going through it,” Molly says.
After a month on the keto diet, the frequency of Kayla’s seizures dropped. At first, she and her family were afraid to get their hopes up. But the pattern continued. On most days, Kayla had no seizures at all!
Sharing her story
When it was time to choose a topic for her seventh-grade science project, Kayla was comfortable enough with her diagnosis to write about epilepsy. She told the class about the disorder, the various treatments, and her own history of seizures. Her teacher later told Molly that Kayla’s oral presentation moved her to tears.
The following year for the eighth-grade science fair, Kayla seized the opportunity to learn more about the keto diet while educating her school community. She hypothesized that her blood ketone levels would increase with exercise. She logged her physical activity along with her daily food intake, weight, blood glucose and ketone levels. Kayla’s hypothesis didn’t hold up, but her project earned her first place in the school science fair. She presented it at the regional level and took home an honorable mention.
“I am in awe of Kayla,” says her mother, Molly. “The ketogenic diet is more than just a project, it’s her life. She’s learned a lot about biochemistry, nutrition and exercise, not to mention patience, sacrifice, endurance and hope.”
After three years on the classical ketogenic diet, Kayla transitioned to a modified version. Pediatric neurologist Alyssa R. Rosen, MD, and the Dietary Treatment Program team at CHOP manage Kayla’s care and help her manage the diet. Just as in Kayla’s case, the modified ketogenic diet is often used when patients are seizure-free and weaning down from the classical ketogenic diet, allowing for more freedom and a lower ketogenic ratio.
Currently, Kayla is allowed 26 grams of carbohydrates and 11 servings of fat each day. Instead of having to finish her meals in 20 minutes, she can spread her calories throughout the day.
The modified diet is a lot easier for Kayla, who is in her school’s marching band and spends a lot of time at practices, competitions and games. Now when the band stops for dinner, she can order a burger (without the bun) or grilled chicken. In the past, she couldn’t eat out without bringing along a scale to weigh her food.
“Looking back on the years when she took countless medications with no improvement and many painful side effects, we’re thankful for this treatment option,” says Molly.
Kayla and her care team at CHOP continue to watch closely for any seizure activity or changes to Kayla’s health, and while she may come off the diet eventually, they all agree there’s no hurry. She has had such success with the nutrition plan, that there has been no reason to consider changing her eating habits.
And ironically, the unique diet that once caused her so much worry in school and social settings has actually freed her from thinking about food. When she goes to a party, food is back of mind, and it’s all about enjoying time with friends.
“It makes the day more about living and enjoying life, less about food. I’m literally eating to live, not the other way around.” she says.