Our Story

It was a quiet morning in our house, I'm sitting on the floor in our living room playing with my son William - he's jumping around, laughing and showing me his best dance moves. He suddenly came to an abrupt stop, his eyes briefly flickered upwards, and then, as if nothing happened, he returned to dancing. I'm not sure why but deep down, my first gut-wrenching thought was... "was that a seizure?".

I continued to watch him all day, obsessively trying to make eye contact to see if it would happen again. It didn't. As the day passed, we started to worry less, reassured that it hadn't happened again. The next day during dinner, my husband and I were talking to William when it happened again. "There, that's it!" I shouted at my husband who had also seen it. We agreed it seemed unusual and that we would call the pediatrician when they opened in the morning. Later that evening it happened three more times, which lead to an after hours call to our doctor and the beginning of our journey.

A short time after in the Fall of 2020 William got his official diagnosis. My husband and I were sitting in a dark hospital room as our son slept through his first overnight EEG, trying to make sense of the monitors and waiting to meet the Neurologist. Finally a knock at the door. His new doctor quietly entered the room being careful not to wake him, introduced herself and began to explain the diagnosis. I swear I can hardly remember anything she said after the word "epilepsy". And after a long discussion about the results, potential treatment plans and follow up appointments we decided to start William on seizure medications.

The first year seems like a lifetime ago. We went through several medications (and combinations of medications), all with little/temporary success or mildly adverse reactions, including increased mood swings and even an increase in seizures. And even more concerning, William's development seemed to be slowing down significantly. Shortly after his diagnosis, we noticed he stopped adding any new words to his vocabulary and was becoming easily upset at the smallest things. As the year progressed he became increasingly more frustrated by his limited language skills and audibility. His moods were erratic, with tantrums lasting up to 45 minutes over something as simple as a crayon breaking.

His seizures continued to present in the same way - a brief pause followed by an upward eye flittering, then seconds later immediately returning back to whatever he was doing or saying as if nothing happened. After almost a year of trial and error with medications, our neurologist determined that William's seizures were intractable (or refractory). Intractable Epilepsy is when seizures are difficult to control with medication alone. We were given the choice between surgery to find and remove the part of his brain causing the seizures or a Ketogenic diet. We began the pre-approval process for both forms of treatment as we weighed out our options. When we got the call that he had been approved for the diet, we decided to move forward. We agreed to a combination of the diet along with sugar-free seizure medications. Our neurologist, and soon to be dietician, had extensive backgrounds in dietary therapies and we felt confident we would have the help and support we needed.

To transition safely onto the Ketogenic diet, William was scheduled to be admitted to the hospital for three days to allow his body time to adjust under the supervision of his doctor and new dietician. While this experience is different for everyone, ours was certainly not without its challenges. William's body had a difficult time adjusting and he was not happy with or interested in eating his new food. By the third day William was refusing all liquids and most of his meals. His glucose was dropping dangerously low and as a result he would vomit up what little he was eating. He had to be hooked up to a fluids IV and we were told we would need to extend our stay until he starting drinking and his glucose was stable. Truthfully, there were moments that week that we wanted give up and just take our sweet boy home. If it wasn't for the incredibly supportive staff at our local children's hospital we probably would have. During our stay we had to be trained on how to administer his diet, how to use a glucose monitor, what to do if he got sick or ate the wrong thing, which personal care products he could use and on and on. While William napped my husband and I would sit staring at our informational binders in shock, eating our cafeteria food and wondering whether we could actually pull this off.

On the morning of day 5, William was completely refusing to eat and drink. His mood was solemn and his spirits were low. By the late afternoon his medical team came in to discuss the idea of letting us go home on a trial basis to see if a change in environment would encourage him to start eating. We were told if he didn't eat and drink by the next day we would have to return. Thankfully they were right and William slowly began to show interest in his food once we arrived back at the house. Phew! The worst of it was over... right?

Nothing can properly prepare you to transition a toddler onto a Keto diet. The first year on Keto for us was rocky to say the least. We were thrilled to see that by the third week his seizures had decreased and it was as if someone unlocked a door to William's speech. Just like that he started talking more, his moods improved and we were slowly adjusting to our new lives with Keto. Seizures and mood swings came and went during the first year. His medical team stayed on top of making the necessary adjustments to his diet, medications and supplements to help reduce both. And despite all the positive progress, there were a lot of really hard days - like 'standing-over-your-food-scale-sobbing' hard. Like that time you cooked all day, stocking the freezer with bulk recipes and prepping 18 meals for the upcoming 3 days just to wake up the next day, discover your fridge died in the middle of night and you have nothing to feed your child who has to eat in 15 minutes. Those kind of days. The meal calculations, finding ingredients, food prepping, timing meals, administering medications and supplements, checking glucose and ketones, journaling - it was a sudden and difficult transition. All of that on top of being busy parents of two energetic toddler boys. Many nights I would tell my husband I just couldn't do it anymore, it was too much. And then we would remind each other of all the progress he was making. He had gone from 13 seizures in one day to going days or weeks in between. He was talking so much, relearning sign language and using visual aids when he couldn't find the words. Tantrum times were decreasing and his moods were stabilizing. As hard as some days were, Keto was working!

In our second year of Keto, I really hit my stride! I'll admit we were mostly in survival mode in year one, counting down a non-existent timeline for when he could come off the diet. Somewhere in-between the first and second year we just accepted that Keto was here to stay for the foreseeable future and it was time to lean into it. And really more than that, I wanted it to be a better experience for our son. I wanted to raise my own standards of what was possible for his diet. So, after a lot of failed attempts, I finally learned how to use the meal calculator (this was a task that was previously and exclusively taken care of by my husband). I simply didn't get it from the beginning but he liked doing it, and it was one less thing on my plate. Determined to start creating new recipes I sat down and forced myself to learn. If this is something you have struggled with too, keep trying! With a lot of practice and determination I was able to overcome something I previously found impossible. Now, I have developed a passion for crafting recipes, experimenting with new foods and products, and I am deeply determined to start helping others.

The reason I started this blog is because I want families that are considering Keto or struggling to maintain the diet to know that there is hope. You can do this, you're more capable than you know and you're doing amazing! And more importantly you are not alone. With profound pride, my family has reached a point in our journey where I can openly and enthusiastically share both our challenges and triumphs with you. As with everything in life, each family's journey will be different. The obstacles we faced are not meant to deter you from starting or staying on the diet but rather to inspire you to know your own strength and to keep going! YOU'VE GOT THIS!

Looking back, the only thing I would have changed, would have been to not be so hard on myself that first year of the diet. I wish I could go back to tell '2021 me' that it was going to get easier, to keep fighting and that at the end of the day, we are amazing parents who have gone above and beyond for our children. So as we head bravely into our third year on the diet I am thrilled to share that William has been seizure-free since the spring of 2023. He has also been seizure medication-free as of the summer of 2023, which means full seizure control using the diet alone. He is thriving at school and almost brings me to tears everyday with the progress he has made. Our hearts are beaming with pride for everything he has had to endure and overcome. It was truly his strength that gave us ours. 💜