The Beginning of our Journey
My son Wyatt started to have unprovoked seizures shortly after his 4th birthday. He was active, meeting developmental milestones, social, a very chatty little boy without a worry in the world and then… epilepsy. It was a beautiful sunny day at the end of May roughly 3 years ago and we were playing in the backyard when Wyatt just stood there, unresponsive, speechless and blankly staring at us. My heart sank. 911 was called immediately. Our house was getting over Covid so I was put in a hazmat suit, seated in the back of the ambulance with Wyatt and rushed to the hospital. He recovered by the time we got there; he seemed fine (I wasn’t) but no one seemed really concerned. We went home and that’s how it all started. Our lives forever changed. We got a neurologist. We had EEG’s done, an MRI, endless bloodwork and genetic testing. We found out Wyatt has a gene mutation on the SCN1A gene (we also found out my husband has the same mutation but has never had a seizure). Wyatt’s gene mutation is considered a variance of unknown significance.
It was a whirlwind. It wasn’t until July 2021 (a few months after his first unprovoked seizure) that we decided to start Wyatt on medicine. It was Keppra and I was hopeful. I remember kissing his sweet face before his first dose because I was afraid, afraid he would slip away from me and what I once knew would be gone. We started meds, he got worse, we gave him more meds, he got worse. We were told to give it time but something didn’t feel right. After a meeting of the neurologist minds, Wyatt was taken off Keppra immediately and this is when our medication rollercoaster began. We were admitted to the hospital weekly; seizures were clustering, he wasn’t coming back to baseline, and we just couldn’t manage it. It was emotionally draining, I was breaking, life was breaking.
We have never really found a medication that truly worked for Wyatt… add new title to Wyatt’s chart: “med resistant”. What we found odd is that as we weaned one med and replaced it with another, we started to see our boy come back to us. Keppra was replaced with Valproic Acid (seemed promising at first but then didn’t work). Clobazam was added to the party and it didn’t seem to move mountains but we’re still on it, and then Topiramate entered the chat (also, wanted to love it but hated it). We have since weaned completely off Topiramate.
This is when we decided that we needed to try something new, something perhaps not pharma? Don’t get me wrong, if any of the above medications were successfully working, it would be blue skies, but it wasn’t. It felt like everything we tried didn’t work and all Wyatt was experiencing were the nasty side effects. Then the Ketogenic Diet… oh, the diet. I was afraid of the diet. I was afraid of Wyatt being different, afraid of all the work, afraid of how it would turn out, afraid of him not eating, afraid of him missing out, afraid of how I could do this. I was afraid. The type of ketogenic diet that Wyatt needed to be on to help with seizure control wasn’t the fad Keto that floods the grocery stores, it was the medically classic ketogenic diet – with ratios, hooray! I had to make everything from scratch, weigh everything to the 10th of a gram and pray and hope that this would give our sweet boy the relief he deserves. For those unfamiliar with the ketogenic diet, it is high fat, moderate protein and low carbohydrate. The ketogenic diet is considered a treatment rather than just a diet. It’s medically and scientifically backed by research – it’s truly incredible what food can do. A book that I read prior to our Keto admission was “Ketogenic Diet Therapies” by Dr. Eric H. Kossoff. It is a fantastic resource for anyone looking to start or who has already implemented the ketogenic diet, I highly recommend.
To start the classic Keto diet, Wyatt was admitted for 4 days in the hospital. In this time we had an ECG, ultrasound and bloodwork – standard “welcome to keto” testing. We were assigned a dietitian (she’s incredible) and it was time to get Wyatt into ketosis. The first 24 hours reminded me of the newborn days. Every 4-6 hours for 24 hours I had to give Wyatt a cream shake (it’s exactly what it sounds like), and yes, this included waking him up at midnight to get him to take it while also simultaneously checking his glucose levels (finger pricks!). It was just about as fun as it sounds. After the first 24 hours of cream shake fun, we transitioned to food. His new food, our new life, his new life. At the same time, you’re also learning to use the food scale, learning the ins and outs of the ketogenic diet, trying to think of food he will like, the supplements you’re going to have to buy, what to watch for if your child goes into acidosis and how to treat it, monitoring blood glucose levels, ketones levels and also reminding yourself that you’ll also have to make regular meals for the rest of your family. To top it off you’re also learning that EVERYTHING has carbohydrates. That shampoo you’re using? Yes, carbs. The toothpaste? Yes! Toss the kiddie paste because that also has carbs. Bubble baths? No way – carbs in the soap! Sunscreen? Of course you should use it, but most have carbs! You get the picture. It’s a complete overhaul. But is it worth it? Totally. While we haven’t found seizure freedom (yet) and some days I cry because it can be hard, it’s been one of the more effective treatments for Wyatt. Since starting Keto (we just hit our two-year anniversary) we have been able to wean Topiramate and add in medical cannabis to see if will help. It’s still early days but we are hopeful.
So, welcome to the Keto Kiddo Journey. A place where you can feel heard, feel less alone, maybe read something I’ve experienced and think “Hey! I’ve felt that too!”. Laugh, cry, feel empowered. Epilepsy is a journey and you don’t have to go through it alone.
Follow along and connect with me on Instagram @ketokiddojourney