National Epilepsy Awareness Month: How a Hail Mary Diet Helped Our Daughter

For a parent, there is no feeling of helplessness.

Early on January 21, 2020, I was doing a live report from Capitol Hill covering the impeachment trial of then President Donald Trump. Back home, about a mile and a half away, our 3 year old daughter, Kyla, fell from her chair while having breakfast and started having seizures on the floor. My wife called 911, then me. As I rushed home, I watched video from our security camera as paramedics walked through the front door of our house. What followed was a trip my family could never have imagined. But now we find ourselves emerging from the other side with a message we feel we need to share.

November is National Epilepsy Awareness Month. The Epilepsy Foundation will tell you that one in 26 people in the United States will develop the disease at some point in their life. It’s a surprising number, but it can also mask an incredibly wide range of impacts. Most people with epilepsy lead normal and productive lives, and newer generations of anti-epileptic drugs generally offer considerable control. Chief Justice John Roberts has battled foreclosures. Elton John too. Some epilepsies, however, are much more complicated and serious. The incurable forms of the disease are very resistant to drugs and can lead to lifelong seizures.

Chief Justice John Roberts sits in a group photo of Supreme Court justices in Washington, DC on April 23, 2021. Justice has battled the foreclosures.
(Erin Schaff-Pool / Getty Images)

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Kyla spent weeks in the hospital and the seizures rarely abated. Doctors call this an “explosive start” and it’s terrifying. Neurologists piled on one drug after another in a desperate attempt to calm her brain, but nothing worked. We finally returned home with a child we barely recognized. A preliminary diagnosis was devastating. Kyla’s seizures, numbering nearly twenty a day, were unlikely to end. His suspicious form of what’s called catastrophic epilepsy suggested constant cognitive decline that would lead to lifelong addiction. Our lives would never be the same again.

Every day we felt like we were losing a bit of our daughter. When she was not in a state of stupor or crisis, she exhibited flashes of intense anger. Kyla began to lose the ability to speak or dress. She was in pain and we were upset.

His medical team suggested something like a Hail Mary. The ketogenic diet, we learned, could often work when other approaches failed. We eagerly agreed, clinging to what seemed like our little girl’s last chance. But in my mind, I was skeptical. Diet therapy. It sounded a little, well, fluffy. I trusted science. And Medication. Could changing what our daughter ate really have a lot of impact?

It has been known for thousands of years that fasting can help prevent seizures. There is even a reference to it in the Bible. When your body begins to starve, it turns to the only source of energy it can find. Instead of fueling your brain with carbohydrates or protein, you start to burn your own fat stores, producing a chemical residue called ketones. Researchers are still learning the “why” of it all, but the transformation can be surprising. While fasting is fine, you can only refuse food for so long. How to maintain a state of ketosis? Doctors have known for over a century that if you consume foods that are extremely high in fat, your body will continuously produce ketones, mimicking a fasting state. This is the ketogenic diet.

For kids like Kyla, that means 90 percent of all calories should come from fat. It’s way beyond the now popular keto diet that many healthy people follow for weight loss. Kyla could only eat trace amounts of carbohydrate and just enough protein to support her growth. His medical team, including a dietician, kept tabs on his progress.

A Baltimore County Fire Department ambulance drives past the entrance to Johns Hopkins Hospital in Baltimore, Maryland on Friday, November 20, 2020. Dr. Eric Kossoff of John Hopkins in Balitmore has helped a family whose daughter is suffering epilepsy.

A Baltimore County Fire Department ambulance drives past the entrance to Johns Hopkins Hospital in Baltimore, Maryland on Friday, November 20, 2020. Dr. Eric Kossoff of John Hopkins in Balitmore has helped a family whose daughter is suffering epilepsy.
(Al Drago / Bloomberg via Getty Images)

When we started the diet, we also asked for a second opinion. We didn’t have to look far. Dr. Eric Kossoff of Johns Hopkins in Baltimore is a pediatric neurologist specializing in epilepsy and one of the world’s foremost experts on the ketogenic diet. A few minutes after meeting Kyla, he told us that she had Doose syndrome (pronounced DOE-zuh). Although results vary, many children overcome the disease and lead normal lives. And the kicker: The most effective treatment for Doose may be keto.

Our kitchen has become our pharmacy. We started to weigh everything Kyla ate. We have followed special recipes using ingredients like almond flour, pili nuts, MCT oil, and heavy cream. We looked at the calculations, tracking each bite on a spreadsheet. Not a single gram of food would escape our attention. And over the weeks, Kyla started to improve. The attacks became less intense, less frequent. One day, about five months after starting the diet, the seizures stopped. Entirely. As we spent the next year completely weaning off all of her medications, something more miraculous happened. The veils of seizures and side effects were lifted and the little girl we knew reappeared. Kyla resumed the conversation. She could identify the numbers and letters again. She had some catching up to do, but eventually she would go back to school and join her classmates. While the possibility of a relapse is very real, his progress has been beyond what we thought possible.

This photo shows a mother jumping towards the pot in the kitchen.  Recently, a family's kitchen became their drugstore as their daughter tried a keto diet to help her fight her epilepsy.

This photo shows a mother jumping towards the pot in the kitchen. Recently, a family’s kitchen became their drugstore as their daughter tried a keto diet to help her fight her epilepsy.
(Annette Riedl / photo alliance via Getty Images)

Keto doesn’t work for all children with epilepsy, but many don’t. Even in our experience, some well-meaning doctors were skeptical. It’s changing. Charities like the Charlie Foundation advocate for diet and provide support to families and health care providers, while others help spread the word in countries where resources are scarce.

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Kyla, now five, is in kindergarten and thrilled to be reunited with her friends. She brings a special lunch to school each day, part of what she calls her “magic diet”. In the coming months, we may start weaning off the diet to see if the underlying disease has passed. Magical indeed.

We are more than thankful that Kyla’s doctors were wise enough to pursue centuries-old treatment for a disease far more common than we have ever experienced. Kyla’s courage through these challenges has been an inspiration.

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