Five Years

It has been almost five years since Sarah’s first grand mal seizure. Her actual five-year anniversary is just a few days away, and I could not let this milestone pass without an update — because so many people have found this site over the years while sitting in the exact fear I was sitting in back in July 2021, and I want them to see where the story goes.

Sarah has been seizure-free for almost five years.

She has been completely off Keppra for almost two years now.

Toward the end, before she stopped taking it entirely, she was down to just 250mg a night — and if I am being fully honest, that final small dose was more of a placebo for her own peace of mind than anything else. She was anxious about having another seizure, and I told her the same thing I believe with my whole heart: it was entirely her decision, whenever she felt ready, in whatever way made her comfortable. She decided when enough time had passed. She stopped. Nothing happened. Nothing has happened since.

Her gut health, which was so central to everything we uncovered back in 2021, is now completely healed. We did a final comprehensive gut check earlier this year and everything came back clean. It takes years to fully rebuild a gut after the kind of damage candida overgrowth and antibiotics can do — I want anyone reading this who is early in that process to know that it is a long road, but it is a real one, and it does lead somewhere.

She eats an incredibly clean diet now — no seed oils, whole and organic foods, nothing processed. She still takes her methylated B vitamins every day. Her weight is healthy and stable at 111 pounds. She is happy. She is energetic. She is engaged to be married next year.

Sarah knows, in her heart, that the research I did — the refusal to accept “idiopathic” and “unknown” as a final answer — is what gave her life back. I want to be careful here, because I try to be careful everywhere on this site: I cannot prove with scientific certainty that the nutritional work alone stopped her seizures, and I have said as much elsewhere on this site. What I can tell you is what we both believe, and what the years since have shown us: she found the root of what was happening to her, she addressed it directly, and she has stayed well long after the medication came off. That is not nothing. That is, I believe, everything.

There is a strange symmetry to where we are now. A few years after Sarah’s diagnosis, our dachshund Koe began having his own seizures. Watching him go through it brought back everything from Sarah’s journey — including, eventually, the same research. I made the same assumptions for him that I once made for her: that poor food quality and damaged gut health were likely at the root, and that dogs, like people, may struggle to properly process and activate B vitamins in ways that matter far more than anyone realizes.

I built a protocol for Koe based on everything I had learned from Sarah. It became something I now call KoeFormula — a natural neurological support powder, currently in development, built on the same principles that gave Sarah her life back. You can read Koe’s full story and the science behind it at koeformula.com.

There is something quietly funny in all of this too. Sarah — the person who started this entire journey — is the one who is now most grateful I eventually turned what I learned from her into something for our dogs. She no longer has to hide pills in Koe’s food or try to trick him into swallowing a capsule. He simply eats his scoop, every morning, without a fight. She jokes that I finally made something that actually works on the first try.

I am not writing any of this to tell anyone to stop their medication. That decision belongs to you, your child, or your dog, and the medical team you trust. What I am asking is that you do not stop asking questions. Ask your doctors what “idiopathic” actually means. Ask what has and has not been tested. Take responsibility for digging further, the way I did, the way Sarah eventually did for herself when it came time to make her own decision about her own medication.

Five years ago I was on a bathroom floor, positioning my hands to start CPR on my daughter.

Today she is healthy, engaged to be married, and has not had a seizure in almost five years.

I want to close this update with the full picture, because I have shared pieces of it across this site over the years but never laid out the whole chain in one place. I believe it started, of all things, with water polo. Sarah played competitively for two years, and the chlorine exposure that comes with that many hours in a pool contributed to skin issues significant enough that her dermatologist put her on Accutane. Accutane treatment came with roughly five months of antibiotics to manage secondary infections along the way. Those antibiotics did not discriminate between harmful bacteria and the beneficial bacteria her gut depended on — they wiped out both, and a candida overgrowth moved into the space that was left behind.

On top of that, we later learned Sarah carries an MTHFR gene variant — something she was simply born with, unrelated to anything she did. On its own, that variant might never have caused a problem; millions of people carry it and never have a seizure in their life. But combined with a gut that could no longer absorb and activate B vitamins properly, because of the candida, her body could not keep up with converting B6 into the active form her brain needed to keep glutamate and GABA in balance. Add in ordinary dietary glutamate she was consuming without knowing it, and every piece of the storm was in place at once.

None of us saw it coming from a swim cap and a pool. I still find that part remarkable. A sport she loved, a skin treatment that followed from it, a course of antibiotics that followed from that, and a genetic variant she had no control over, all quietly stacking on top of each other until one Sunday morning in July 2021 everything gave way at once.

I share the whole chain now, five years later, because I think it matters for anyone reading this who is still searching for their own answer. The cause is very often not one thing. It is usually several ordinary things arriving together.

I hope that means something to whoever is reading this tonight, in whatever version of that bathroom floor you are currently standing in.

— Eric