Question: What was Rosemary’s age when she started the ketogenic diet and how old is she now?
Answer: Rosemary started the diet at 4 months old and is now 9 years old.
Question: Which ketogenic diet did you use?
Answer: Rosemary was on a classic 4:1 ketogenic diet.
Question: If you have weaned off the ketogenic diet, please tell us a bit about that experience.
Answer: Rosemary was slowly weaned off the ketogenic diet by decreasing her ratio. The full wean process took a few months. For the first few years after the diet we remained very strict about sugar intake (only allowing on special occasions and in moderation). Now we still limit sugary treats and desserts but mostly for general health reasons (although the seizure/carb threshold still lingers in our minds). We avoid processed foods, artificial colors/dyes, and sugar sweetened beverages.
Question: For parents starting their keto journey, what is your # 1 piece of advice for success?
Answer: Find an organization and preparation system that works for you. By planning, you reduce the stress of being caught in a situation where you don’t have access to food options. For example, we did all our meal prep on Sunday evenings. We pureed vegetables, measured out fruit portions and cooked recipes for the week and froze in large batches.
Question: Knowing what you know now and looking back, what would you have done differently when you were on your ketogenic diet?
Answer: MCT oil wasn’t around for us, so we relied heavily on butter and coconut oil. I wish we had relied more on olive oil/avocado oil.
Question: What do you wish you would have known before you started your ketogenic diet journey?
Answer: We were lucky that our daughter was a “super responder” but in hindsight, I should have asked more about what “success” on the diet meant. That a 50% reduction in seizures is considered a success-that may not be clear to everyone initiating the diet, and could lead to unfulfilled expectations. Maybe I was told this early, but as you know, in those first visits, a lot of what is said may not be “heard” by families who are still reeling from the diagnosis.
