Our Story with Epilepsy & the Ketogenic Diet

I’m Elisabeth, the mother of Naois (now almost 10 years old). Together with my then-husband and our two young sons, we led an adventurous life, living and working in Ethiopia for five years. Our days were filled with travels and explorations, until everything changed in an instant seven years ago when our youngest son, then 2.5 years old, experienced his first seizures.

The first seizure in Ethiopia

We were having breakfast when Naois suddenly collapsed to the ground. He’s quite the joker, so initially, I thought it was a playful act. But it quickly became clear that something was terribly wrong. He stiffened and began convulsing—his older brother thought he was dying. In a panic, I called a friend who advised us to rush to the ‘Swedish’ clinic. There, he experienced more seizures. With no EEG or CT scan available in Ethiopia, we had to seek further medical attention in Kenya. The diagnosis revealed epilepsy, but at that time, his seizures were sporadic. After a week, armed with medications, we returned to Ethiopia.”

Back to the Netherlands

Unfortunately, Naois soon experienced a surge in seizures, leaving us no choice but to seek help in the Netherlands. Here, with access to better resources, he was admitted to Juliana Children’s Hospital in The Hague. The neurologist confirmed his epilepsy diagnosis, although the specific form, resembling Doose’s syndrome, remained unclear.

Trials and tribulations

During his hospital stay, Naois underwent various medication trials, but none provided significant relief. It was a tumultuous time—relocating, helping our eldest son adjust to life in the Netherlands, and my husband returning to Ethiopia to pack our belongings. And then, there was the constant worry for our 2.5-year-old, whom I had to keep close at all times due to his frequent falls.

Embracing the Ketogenic Diet

Despite our efforts, medications seemed ineffective, leaving Naois agitated and unsteady, while seizures persisted. After about nine months, the neurologist proposed a new approach—the ketogenic diet. Transitioning to the diet at Erasmus Sophia Children’s Hospital in Rotterdam felt daunting, but within weeks, we noticed a remarkable improvement. He only experienced seizures at night!

A journey of Hope

As we approach 5 years on the diet, we’ve gradually reduced medications and witnessed remarkable progress. Though there’s still epileptic activity visible on EEG, Naois no longer displays visible seizures. Yet, the transition away from the ketogenic diet poses its own challenges, filled with apprehension and uncertainty.

Finding Purpose

Reflecting on our journey, I’ve embarked on a personal and professional transformation. Keto Cool was born from my desire to support parents navigating similar paths. I’ve experienced the isolation and desperation firsthand and aim to offer guidance and empathy to those in need. Alongside, I’ve learned the importance of self-care and embracing life’s simple joys, inspired by Naois’s resilience and carefree spirit.

This website uses cookies. By continuing to use this site, you accept our use of cookies.