My Daughter’s Epilepsy Journey
My Daughter’s Epilepsy Journey
When my daughter was diagnosed with epilepsy, our lives changed almost overnight. Her seizures began as tonic-clonic seizures, requiring hospitalization, testing, and immediate medical intervention. Medication became an important part of her care, and thankfully those seizures came under control. As one seizure type improved, however, another emerged. She began experiencing frequent drop seizures, also known as atonic seizures, causing her to lose muscle tone and collapse without warning. At one point, she was experiencing well over one hundred drop seizures a day. Like so many families navigating epilepsy, our lives quickly became centered around neurologists, EEGs, medication adjustments, emergency plans, and learning to live with uncertainty.
As grateful as I was for the care she was receiving, I found myself asking a question that never seemed to leave my mind. Rather than asking only how we could manage the seizures, I wanted to understand why her nervous system had become so vulnerable in the first place. That question wasn't born from a rejection of conventional medicine. It came from my own experience years earlier with Lyme disease, mold exposure, and chronic illness. Walking through that season taught me that the body is deeply interconnected and that symptoms often have contributing factors beyond the diagnosis itself. It also taught me that different practitioners often ask different questions, and sometimes those questions reveal pieces of the puzzle that would otherwise remain unseen.
While continuing her neurological care, we began expanding the conversation. We pursued additional testing that looked beyond the brain alone, including environmental exposures, toxic burden, gut health, nutritional status, and metabolic function. At the same time, we assembled a broader medical team that included neurologists alongside practitioners in functional medicine, herbal medicine, nutrition, and environmental medicine. Our goal was never to replace one approach with another. It was to better understand the whole picture and make thoughtful decisions based on everything we were learning.
Some of what we found surprised us. Testing revealed elevated levels of heavy metals, evidence of mold exposure, gut infections and additional findings suggesting that her body was carrying a significant physiological burden. Those results naturally led to another question. If testing showed mold exposure in her body, could her everyday environment be contributing to that burden?
We decided to investigate our home. Years earlier, while recovering from my own chronic illness, I had learned that healing rarely begins by adding more. It begins by identifying and removing the things that are continually working against the body's ability to recover. Before asking her body to heal, we knew we first had to eliminate the ongoing source of exposure.
Environmental testing confirmed that mold was present in our home, something we never would have known simply by looking at the walls or walking through the house. We began the process of professional remediation and made significant changes to create a healthier living environment for our family. Follow-up environmental testing confirmed that the mold had been successfully removed from our home. Her body still carries a significant toxic burden that we continue to address, but removing that ongoing environmental exposure gave us something we hadn't had before: a healing environment. We were no longer asking her body to recover while it remained in an environment contributing to that burden.
That philosophy continues to guide our daughter's care today. Alongside her neurological team, we have intentionally chosen a slower, root-cause-focused approach that seeks to understand the health of the body supporting the brain. We continue investigating gut health, nutrition, environmental exposures, metabolism, and toxic burden while working with practitioners across neurology, functional medicine, herbal medicine, nutrition, and environmental medicine. We don't view these approaches as competing with one another. We believe each contributes a different perspective toward the same goal: giving her body the strongest possible foundation from which to heal.
Because of my own experience with chronic illness, I didn't need to be convinced that the body is interconnected. What I wanted to understand was whether the same principles I had learned through Lyme disease, mold illness, and environmental medicine were being explored within epilepsy. As I began reading the literature, I found researchers around the world studying the gut-brain axis, the microbiome, mitochondrial function, inflammation, immune dysregulation, metabolism, nutrition, and environmental toxicology in relation to seizure disorders. That research didn't lead me to simple answers, but it reinforced my belief that epilepsy deserves a broader conversation than seizure management alone.
This is ultimately why I am sharing our story. I am not writing because I believe we have solved epilepsy. We haven't. I am writing because I believe every diagnosis deserves a deeper understanding of the body supporting it. Whether the diagnosis is neurological or something else entirely, I believe health begins with asking foundational questions. What is placing stress on the body? What deficiencies exist? What toxic exposures are present? How healthy is the gut? Is the immune system functioning well? Are there environmental factors that can be identified and addressed? These are the questions that shaped my own healing years ago, and they became the questions that shaped how we approached our daughter's care.
My experience has convinced me that healing is rarely about chasing a diagnosis. It is about creating the conditions that allow the body to function at its best. That means reducing unnecessary burdens where we can, nourishing the body well, creating a healthy home environment, and supporting the systems that sustain long-term health. I don't see those efforts as separate from medical care. I see them as the foundation upon which every other decision rests.
My hope in sharing this story is not to tell another family what path they should choose. It is to encourage parents to become informed advocates for their children, to ask thoughtful questions, seek evidence, and recognize that there are practitioners across many disciplines asking important questions about the whole body. That philosophy has shaped every decision our family has made, and it will continue to guide us as our daughter's story unfolds.
This is the beginning of our story. In the articles that follow, I'll share the testing we pursued, what we learned about mold, the gut-brain connection, environmental health, and the emerging research that has shaped our family's approach to drug-resistant epilepsy. My hope is not to provide all the answers, but to give other families a place to begin asking questions of their own.
