“Mom, I’ve decided I’m going to be proud of my epilepsy.”
Beth Van Eetlvedt tells a story that would chill any parent to the bone. Her 4-year-old daughter Helaine (Laine) was at preschool when she had a seizure during circle time. Further testing led to a diagnosis of epilepsy, and Laine was put on medication. That worked for almost two years.
“It was around Easter 2021 when, out of the blue, she had another seizure,” Beth says. “But this one was different. It was clustered, and I thought she was choking. When Laine has a seizure, she turns dark gray, like the color of asphalt, and she looks like she’s dying. I now know she’s not, but it’s your worst nightmare, watching your child do that, not knowing what to do and not being able to help them.”
Thinking Laine had probably outgrown her medication, the doctors increased her dosage. But on the third day of first grade, Laine ran up to her teacher and said, “I’m going to have a seizure,” and immediately did. When Beth arrived, Laine had four more seizures in the nurse’s office.
Laine’s neurologist increased her dosage again, but the side effects were troubling. Laine started having intense panic attacks, most likely caused by the medication and the post traumatic stress from having a seizure in front of her classmates. An anti-anxiety medication was added to the mix.
“At the height of her anxiety, I couldn’t be away from her at any point,” Beth says. “I couldn’t not be touching her—going to the bathroom, sleeping, driving, you name it.”
A Nutrition-Based Approach
As the side effects of Laine’s medications began to outweigh the benefits, Beth began looking for a different therapeutic approach. She made an appointment with Jong Rho, MD, division chief of pediatric neurology at Rady Children’s and professor of neurosciences, pediatrics and pharmacology at UC San Diego.
“It was such a breath of fresh air to talk to a doctor who took her whole health into account,” Beth says. “Not just the epilepsy and the medication to control the epilepsy but her entire health history.” Dr. Rho asked about Laine’s birth and development, including whether she had crawled. At one point, he started measuring her birthmarks. “He told me sometimes they indicate spots on the brain, and it’s important to measure and track them over her lifetime,” Beth says. “They can indicate things happening internally that are actually visible externally, which just blew my mind.”
In addition to refining her medication and prioritizing healthy exercise and consistent sleep, Dr. Rho suggested they immediately remove refined sugar and carbohydrates from Laine’s diet.
Diet as a means to treat epilepsy is not new. In fact, the ketogenic diet was developed more than a hundred years ago as a way to control epileptic seizures. By mimicking the biochemical changes that occur in the brain when fasting, medical diets—like the ketogenic diet, medium chain triglyceride diet, modified Atkins diet and low glycemic index treatment—dampen the abnormal neural activity that causes seizures and protect brain cells. However, the emergence of anti-seizure drugs in the mid-20th century pushed dietary treatment into the background.
Renewed research, led in part by Rady Children’s Center for Precision Nutrition, supports dietary changes, often paired with medication, as an effective tool to prevent epileptic seizures. Dr. Rho and others are finding that medical diets can be particularly helpful for kids like Laine who don’t respond well to medications alone.
Adjusting To A Medical Diet
Beth and Laine were all in. Yet, preparing meals for a young child can be challenging at the best of times, and now Beth had to make it work without sugar or carbohydrates, following the low glycemic index diet.
“At the time, Laine was living off peanut butter and honey sandwiches,” Beth says. “She didn’t like meat or cheese, and she’s allergic to avocados. I was defaulting to a lot of fruit, bread and juice. Not quite junk food, but still a lot of sugar. She and I made a commitment. I told her, ‘I’ll do it with you. Whatever you eat, I eat. Whatever you can’t eat, I won’t eat. We’ll be in this together.’”
Social media and other resources helped Beth pull together a few recipes, but it’s been “a big learning curve.” They tried to make almond flour pancakes and at first they tasted like bark. Adding bananas didn’t help much but coconut sugar did. Eventually, they made a pancake recipe that tastes delicious and fits Laine’s dietary needs.
“It’s a lot of label reading and doing the math to figure out net carbs,” Beth says. “We found some great keto-friendly crackers she loves, and we’ll combine those with sugar-free nut butters. We eat a lot of string cheese, seeds and nuts, and things like that. I make a lot of whipped cream without sugar.”
Laine’s health improved almost immediately, and she has not had a seizure in almost a year. In addition, her pre-seizure auras, which Laine calls “funny feelings,” mostly went away. In fact, with adherence to her diet, Laine’s clinical team expects she’ll no longer need anti-anxiety medication and can lessen her anti-seizure medicine soon. “It changed her personality back to this free, fun-loving, creative, silly kid that had disappeared for a while,” Beth says. “We were in the grocery store, and she ran ahead of me, skipping, dancing, singing. She was having some kind of musical theater moment in her head. I watched that, and I thought, she’s back!”
Change In Diet, Change In Perspective
Initially, 6-year-old Laine didn’t want anyone to know she had epilepsy. She would often ask her mom to make excuses for why she couldn’t eat cake—but that suddenly changed.
“We were in Starbucks, and out of nowhere she said ‘Mom, I’ve decided I’m going to be proud of my epilepsy,’” Beth says. “I asked her what had changed, and she said she realized that if she’s not proud of it, she can’t help other people. She said, ‘There are a lot of kids with epilepsy that need help, and a lot of people who don’t understand epilepsy, and they can’t help other people with epilepsy. We have a lot of work to do, Mom.’”
Laine is already putting her philosophy into action. When a girl with spina bifida joined her Girl Scout troop and was being teased about her height, Laine quickly stood up for her new friend.
Having epilepsy “has developed this sensitivity and compassion in her because she gets what it means to be different in certain ways,” Beth says. “I couldn’t be more proud of her, and I think it’s equipping her to do really beautiful things in the world.”