Freedom after 7 years on medical ketogenic diet
Dear Naois,
It’s now official. Sunday was the last day you had a ketogenic meal. For seven years, we’ve had to cook five ketogenic meals a day for you. For seven years, we’ve spent at least an hour every day in the kitchen preparing your school bag. Every container labeled. “Naois 10 am,” “Naois 12 pm,” “Naois 3 pm.” You had your own fridge. On the left shelf was your breakfast. Usually a smoothie. Along with the extra vitamins you needed to stay healthy. Potassium citrate to prevent kidney stones. Vitamin D to fight bone loss and boost your immune system. Echinacea. Depakine. CBD oil capsules. Probiotics. Fruitivits and fish oil capsules.
Because yes, after so many years on a strict medical diet, your bone density isn’t what it should be. And neither is your immune system.
To the right of your breakfast was your 10 am snack. Often blueberries, a slice of goat cheese, and whipped cream. Goat cheese is your favorite. A sort of reward for eating the whipped cream. Next to that was your lunch. We tried to vary it, but it was tough. Macadamia bread and avocado. Salmon and sour cream. Often nuts on the side for extra calories and fat. Then there was your 3 pm snack. Usually Keyo with something extra. And next to that, your dinner. Homemade pizza, spinach quiche, meatloaf, omelet, tomato soup with lots of cream and pine nuts. That was often what you had to choose from. And finally, on the far right of the shelf, there was a keto drink with extra fat before bed. To prevent nighttime seizures. And, of course, your medication.
For 7 years, you drank Slimpie syrup. For 7 years, we spent hours cooking a few times a week to fill the freezer with ready-made meals for you. 7 years of making sure we never forgot anything, always planning, calculating. Never just a spontaneous day out or a vacation. We always had to prepare everything, and when we went on vacation, we often started a week ahead, making lists and packing. Half the car always filled with things for your ketogenic meals.
What a journey it’s been. When we started, you had so many seizures. You kept falling. I remember many nights, hopelessly holding you in my arms after yet another tonic-clonic seizure. You were so weak and small and sweet and helpless. I would look at you and stroke your hair and think about your future. Wondering if things would ever get better. Thinking about what I could do. And why this was happening to us. So often, I felt on the verge of calling 911 in the middle of the night. But then I’d think, don’t overreact. It’ll be okay.
When you managed to go to school or the medical daycare, we’d often get a call asking if we could pick you up. Another seizure. Blood. A trip to the doctor. Bandaging wounds. I held you tight. I had to be strong. We had to keep going. But it often felt so hopeless and powerless.
We still tried to do fun things. We’d go to a playground with lots of sand, where I could let you roam freely for a little while. I became the kind of mom I didn’t want to be. I couldn’t give you the freedom every child should have. I was that terrible helicopter mom. As I write this, so many of those moments come flooding back. Too many to list right now. And besides, it’s not just a list.
For 7 years, we cooked ketogenic meals for you. Your medicine. In those 7 years, you slowly but surely became seizure-free. The EEGs aren’t exactly where they should be, but we’re sleeping again. You can run, and I don’t need to hold your hand all the time anymore. I can leave you alone in a room for a little while. You laugh a lot, and you’re such a happy little boy. You’re learning to write, read, and count. You’re full of life and joy. And so am I.
It’s a miracle how well you’re doing now. All that cooking, planning, and calculating was more than worth it. A year ago, we started slowly reducing the ketogenic ratio of your meals. Gradually, less fat. Gradually, more carbs and protein. The diet prescriptions changed every month. We had to come up with new recipes and constantly recalculate how much of what you could have. And now, we’ve arrived at the end. No more ketogenic diet. It feels so strange. I keep feeling like I’m forgetting something. It turns out people who lose a limb still feel it. That’s how this feels right now.
It still hasn’t fully sunk in. We had a little ritual with your dad where we burned the papers with your diet prescriptions on them. You’re doing well. You love that you can now eat with us. For the first time, you can choose something from a restaurant menu. You don’t really know what or how yet. A whole world of flavors and possibilities is opening up for you. But it’s also a little overwhelming—all these new things you’ve never tried. It’s like you’re tasting life for the first time.
You even seem to have more energy. Brighter. We’ve even gone out for the day. We went to Blijdorp Zoo. I didn’t need to pack anything. A whole sea of time and freedom lies ahead of us now. We’re going to travel and enjoy all that life has to offer.
Love you.
Your mom.
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