Keto Superstars: Where Are They Now?
/The Keto Hope team has met some truly amazing kiddos and families over the past six years. These kids are true superheroes. But the moms, dads, grandparents, aunts and uncles who tirelessly prep and cook keto meals or provide keto tube feedings for their kiddos several times a day also possess super powers. We see you….we know it’s not easy! We want to take a few minutes to highlight some of the keto super stars we have met over the years and see what they are up to!
Superhero: McKinley
Question: What was the age of McKinley when she started the ketogenic diet and how old is she now?
Answer: McKinely was 5 months old when she started the diet and she is now 4 ½ years old.
Question: Which ketogenic diet did you use?
Answer: We used the classic ketogenic diet at a 4:1 ratio.
Question: Are you still currently on a ketogenic diet?
Answer: We are still on the diet and plan on being on it for as long as it helps. She’s currently at a 2.5:1 ratio.
Question: For parents starting their keto journey, what is your # 1 piece of advice for success?
Answer: It can be very intimidating but remember it gets easier with practice. For us, once McKinley started purées, doing bulk batches was and continues to be my number 1 tip. Mashed avocado freezes perfectly!
Question: Knowing what you know now and looking back, what would you have done differently at the start of your journey?
Answer: I wish I had discovered a more knowledgeable team from the start versus nearly 2 years in. Our original team lacked in many areas and without my consistent research, I feel the diet would not have been successful with them. I’m glad I found Denise Potter and glad I found a local team that was more knowledgeable.
Question: What do you wish you would have known before you started your ketogenic diet journey?
Answer: I wished I would have known that Topomax and keto don’t play nicely. That combo landed us in the hospital many times for the first year because of recurring acidosis. Glad we realized it eventually and weaned off that AED.
Mckinley’s story has always been one of our top posts. We invite you to Meet Mckinley, CDLK5 Warrior! Mckinley inspired her parents to start mightyinchstones.com , a community-driven platform dedicated to celebrating small victories on the special needs journey.
Superhero: Rosemary
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.
Superhero: Roman
Question: How old was Roman when he started the ketogenic diet and how old is he now?
Answer: Roman was 9 years old when we started the diet and he is now 12 years old.
Question: Which ketogenic diet did you use?
Answer: We have used both a modified Atkins diet and a low glycemic index diet.
Question: Are you still currently on a ketogenic diet?
Answer: Yes, Roman is still on the low glycemic index diet.
Question: For parents starting their keto journey, what is your # 1 piece of advice for success?
Answer: Read everything you can about the diet.
Question: Knowing what you know now and looking back, what would you have done differently at the start of your journey?
Answer: I would have tried the diet and meds separately. We started both at the same time and don’t really know which was working.
Question: What do you wish you would have known before you started your ketogenic diet journey?
Answer: I wish we knew more about the long term health implications of a high fat diet. I still feel like I’m having to choose between heart disease and epilepsy.
If you want to learn more about Roman and his ketogenic diet journey, check out this amazing blog post: Keto Hiking Adventure explaining how he and his family walked 275 miles of the Appalachian Trail over 6 weeks all while Roman was on a ketogenic diet.
Superhero: Jonah
Question: How old was Jonah when he started on the ketogenic diet and how old is he now?
Answer: Jonah was 3 years old when he started the diet and he is now 9 years old.
Question: Which ketogenic diet did you use?
Answer: Jonah was started on the modified Atkins diet at a 30 grams or less net carb restriction.
Question: Are you still currently on a ketogenic diet?
Answer: Yes he remains on a modified Atkins diet with <30 grams of net carbs a day. We have had several conversations over the years with our healthcare team about weaning. Our concern has always been that if we wean and his seizures worsen there may be a chance that he would not get the same seizure control if he resumed the diet.
Question: For parents starting their keto journey, what is your # 1 piece of advice for success?
Answer: Come prepared for your initial appointment. Do your research about the diet beforehand so that you can ask questions and have an informed conversation with the healthcare team.
Question: Knowing what you know now and looking back, what would you have done differently at the start of your journey?
Answer: I would not have taken for granted the 6 months of seizure freedom he initially had when we started the diet. We just assumed since the diet worked really well from day 1 that it would work for 2 years and then we would wean off to a non-seizure life. But that isn’t how it worked out. Remember to be realistic. For example when kids are sick you may see more seizures or when they cheat on the diet (and this does happen), they may have more seizures.
Question: What do you wish you would have known before you started your ketogenic diet journey? Which question do you wish you would have asked your medical team that maybe you didn’t think of asking?
Answer: I wish I would have asked more questions about the blood work frequency and results and their impact on the ketogenic diet plan as well as his overall health. I would have asked for more nutrition related baseline blood work to be completed so we had more comparative values.
We interviewed Jonah at age 7 and got a child's perspective of being on the ketogenic diet for epilepsy. We highly recommend you watch it here.
Thank you to everyone over the years who has shared their stories with us! These are only a few of the amazing superheroes we have been blessed to meet. If you would like to share your keto journey, please e-mail us at info@ketohope.org. If you are new to a ketogenic diet, be sure to request a support parent through our Keto Friends program. You can learn more about our support programs on our website at www.ketohope.org/familysupport.