Keto Hope Blog: Keto Super Stars: Meet Eleanor

Author: Hilary Bassett

How the Ketogenic Diet Transformed My Daughter’s Life: A Journey with Ring 14 Syndrome

When I first learned about the ketogenic diet, I had no idea how profoundly it would change my daughter Elee's life. Elee has been on the keto diet for over 2 years now, since she was 11 months old, and it has been nothing short of life-changing. But our journey didn’t start with a simple decision to try a new diet; it began with a heartbreaking and terrifying health crisis.

A Challenging Beginning: Elee’s Diagnosis and Struggles with Seizures

Elee was diagnosed with Ring 14 Syndrome, a rare genetic disorder that causes a wide range of developmental and physical challenges, including severe seizures. Her first seizure occurred at 9 months old in October 2022. We went to the hospital by ambulance for treatment. Unfortunately, her seizures didn’t respond to rescue medications and she was hospitalized for more than a month, not leaving until December 2022. Despite all medical efforts, we couldn’t seem to gain control over the frequency or severity of her seizures.

For a child as young as Elee, watching them go through such a traumatic experience was heart-wrenching. Before her seizures began, Elee had been a happy, healthy baby who loved exploring new foods. She had been exclusively breastfed and began baby-led weaning at 6 months. Her love for food knew no bounds, from pizza and chicken to broccoli and steak. But as the seizures took over, she lost her appetite, and her eating habits regressed drastically.

The Turning Point: Introducing the Ketogenic Diet

The turning point came right before Thanksgiving in November 2022, when we made the decision to start Elee on the ketogenic diet. Through the lens of social media, we had already seen how some children with epilepsy experienced remarkable improvements in seizure control through this high-fat, low-carbohydrate approach. I was intrigued by the idea of using food as a form of “pharmacology,” especially since traditional medications hadn’t worked for her.

At the time, Elee had gone as long as 72 hours without a seizure, but that was her longest streak. When we began the keto diet, something miraculous happened. Elee went a record 52 days without a seizure! She was still on several anti-epileptic medications, but the combination of the ketogenic diet and her meds seemed to work synergistically, giving her the control we had longed for. Even though she still occasionally experiences seizures, they are now limited to once a month, a far cry from the constant struggle we faced before. She is currently experiencing her longest seizure free streak and is at 84 days today!

Rebuilding Her Strength and Love for Food

When we started the keto diet, Elee had regressed to only taking breast milk in bottles. To help her regain her strength and confidence in eating, I introduced her to a medical ketogenic formula mixed with breast milk. Slowly but surely, she regained the energy to start eating real food again. For her first birthday, I made her a homemade 4:1 keto cake, which she absolutely adored. Little by little, Elee started eating whole foods again, and today at 3 years old, she’s thriving on a 2.5:1 ratio.

I’m constantly in awe of how she’s able to enjoy a wide variety of delicious keto foods, from her favorite chopped veggie sub salad with oil and mayo, homemade cheesy goldfish snacks, and spinach bites, to salmon and steak. I use ingredients like cream cheese, butter, olive oil, avocado oil, heavy whipping cream, and MCT oil to keep the fat content high, ensuring she stays within her keto ratio.

The Reality of Managing the Keto Diet for a Toddler

As much as the ketogenic diet has been a miracle for Elee, managing it is no small feat. I’m a huge advocate for the diet, and I’m passionate about sharing her journey on her Instagram page, @pawsforelee. I make all her food from scratch, with the occasional exception of a hot dog (which she loves paired with pimento cheese). To make her meals more exciting, I use dozens of silicone molds to create themed snacks for each week’s learning focus in preschool. I also use these molds for birthday parties and other social events, ensuring Elee has something she can eat while other kids are enjoying their treats.

However, despite the success we’ve had with the keto diet, there are many challenges. The process of calculating her meals and ensuring her fat-to-protein-to-carbohydrate ratio is precise is still a significant hurdle. I use an app for meal planning, but its ingredient database is limited, and I often find myself doing manual calculations to ensure everything is accurate. Many parents I’ve spoken to have given up on the keto diet for their children due to these difficulties, and I understand why. The burden of calculating ratios and creating balanced meals by hand can be overwhelming.

What I’ve Learned and My Hopes for the Future

Looking back, I’m incredibly grateful for the keto diet and how it has helped Elee, but I know there’s room for improvement. I’ve learned that making my own recipes is not only doable but also becomes easier with time. It’s a labor of love, and while it takes effort, I know it’s making a world of difference in Elee’s health. My hope for the future is that as she grows older, the keto diet will become her primary form of seizure control, with fewer medications required.

In an ideal world, there would be better tools for parents managing the keto diet for children. I’m in conversations with a keto app developer to add ratios to their program, which would make the process significantly easier. If we could have unlimited access to a comprehensive ingredient database, meal calculations could be automated, and more parents may find success with the ketogenic diet.

Final Thoughts

Elee’s journey has been nothing short of miraculous, and while there are still challenges to overcome, the ketogenic diet has given us hope and a sense of control we didn’t have before. If you’re considering the ketogenic diet for your child, my advice is simple: it gets easier with time, and creating your own recipes is entirely doable. The results are worth the effort!

Elee’s story is one of perseverance, love, and the transformative power of food. While the ketogenic diet is not a one-size-fits-all solution, it has certainly been life-changing for our family. And for that, I’m forever grateful.

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. 

Keto Super Stars: Meet Fuad

By: Keto Mom Tito

What was your main reason for pursuing the ketogenic diet?

Our son was diagnosed with periventricular grey matter heterotopia at the age of 2. A friend told us about the ketogenic diet for seizures and after doing some research, we decided to try it and see if it would work for him. At the age of 3, he was put on the Modified Atkins Diet (MAD) as it is more flexible than the “classic” ketogenic diet. We initially started with a carbohydrate restriction of 20 grams a day, but he is now on 50 grams of carbs a day and still maintaining good seizure control. We check his ketones every morning and before bed to assure he is in ketosis. 

What other treatments have you tried and stopped in the past?

Initially after his diagnosis, he was put on Keppra (levetiracetam) to help manage the seizures. Unfortunately, this medication led to irritability and fatigue. The seizures also got progressively worse over time increasing from monthly to every two weeks. We did not want to keep adding medications to manage his condition so seven months after his diagnosis and after trying and failing Keppra, the MAD was started. 

What are some of the difficulties you encounter with the ketogenic diet and how have you been overcoming them? 

In the beginning, finding recipes he would enjoy was very difficult. It was mostly a matter or trial and error. Also sticking to the extremely low level of carbs allowed daily was a challenge but over the years, we have been able to create multiple meals that are our go to while also trying to create new meals and snacks to try. Our go-to- meals include keto pancakes and turkey sausage, Two Good™ yogurt with berries, and fathead dough pizza crust which is made with cheese, cream cheese, egg and some type of low carb flour.  Kitchen staples in our lives include measuring spoons, cups, spatulas and lots of mixing bowls. 

What has been the best thing you have seen as a result of the ketogenic diet?

The seizures stopped right away, and he has not had a seizure episode for almost 3 years now. He is thriving and is back to being the curious, fun-loving boy dad and I love. 

What do you wish you had known at the beginning that you know now?

I have to say that the Ketogenic clinic team at University of Chicago Hospital is a godsend. The team was with us every step of the way from the beginning. My questions were always answered promptly and thoroughly. I cannot thank his dietitian Stephanie Schimpf enough, she made the whole process bearable for us because she was always there to encourage us, provide ideas with his meals and was there for us as needed. 

What is a piece of advice that you would give to families who are thinking about starting the diet or who have just started?

My advice for families who are thinking about it and those who have started would be to please give this diet a shot. It is very challenging, but the rewards are immeasurable. Our son has a chance at a great quality of life because of this diet.

Keto Super Stars: Meet Charlotte

By: Ashley Oldaker (Keto Super Mom)

While we have just begun our Keto journey earlier this year, our journey to get here has been a little longer. Our daughter, Charlotte (5), had her first tonic-clonic seizure at 9 months old. We rushed her to the ER where they ran tests on her and everything came back fine. A few months later she had her second tonic-clonic seizure and we again took her into the ER. This time around we were referred to a pediatric neurologist at our Children’s Hospital, here she was diagnosed with generalized epilepsy.

We weren’t fully convinced it was just generalized epilepsy, we started to compare the two, thinking it was maybe tied to being sick/on medication or something to do with food. When we looked back at the first one, she was getting over croup, this time she was getting over an ear infection. We also realized both happened right before mealtimes. We thought we were onto something, but then a few months later she had her third tonic-clonic seizure. This time she wasn’t getting over an illness or on medication, however it was right before breakfast. We were convinced these seizures were tied to when/what she was eating. Since this seizure didn’t fully present itself like the other two, we decided it was time to put Charlotte on an anti-seizure medication, so at around 15 months old she was on Keppra with regular follow up appointments with her pediatric neurologist. 

The Keppra was working, we didn’t see any more tonic-clonic seizures, however Charlotte would have these odd episodes where she would say she was dizzy and was clearly out of it. We would give her a little juice or some fruit snacks, or she would take a 15 minute nap and she would perk up. We brought this up at each of our follow up appointments with her neurologist. We would either run more tests, or up her Keppra. After upping her Keppra, Charlotte would be good for a couple of weeks and then these dizzy spells would come back. During this time, we also noticed Charlotte was developmentally behind on her milestones. We were starting to wonder if she was just doing things on her own time/terms or if the medicine was causing issues. 

Throughout the years of regular pediatric appointments and routine follow ups with her neurologist we had MRI’s, EEG’s and bloodwork done. Each time, everything would come back normal. This was great news, but also frustrating to us because we knew something else was going on. She shouldn’t be having these dizzy spells as often as she was. During her routine follow up with her neurologist in November of 2021, we went back to the drawing board and started from the beginning. At this time, we decided to do some genetic testing. We were hopeful, but scared about the can of worms we could be opening with doing this testing. In December we got a call from her doctor, she had good news for us, we finally know why Charlotte is having seizures and her little episodes, and she was diagnosed with Glut1 Deficiency. 

Glut1 Deficiency is a rare genetic disorder that impairs brain metabolism. Essentially, Charlotte’s brain isn’t able to process glucose properly which prevents it from growing, developing and functioning as it should. With a diagnosis, we finally had answers, and we could get her on the right treatment plan. Currently, there is no cure for Glut1, however, a medically supervised Keto diet can help improve most symptoms. What is Glut1 Deficiency?

Right before Charlotte’s 5th birthday, we decided to start the Keto diet, under the guidance of her new Keto team, we started the diet from home and eased her into it. The first week, we swapped out one meal to be a keto meal. The second week, we did two meals as keto. The third week, all three meals were keto, but her snacks were still regular. Finally the fourth week we were full blown keto. To be honest, we were very overwhelmed and scared during this transition. We were worried she was going to want her usual snacks and meal options of chicken nuggets, goldfish crackers, yogurt, etc. We tried to explain to her the best that we could, that she would need to go on this special diet to help her brain and body grow and feel better, she wouldn’t be able to eat some things she used to anymore. At first it was a little bit of a struggle, but by the time we were full blown Keto, she was realizing she can still eat a lot of food she likes, but things have to be made special just for her. She thinks she is pretty cool because at school she has her own special tray with her own food. 

We are only on our fourth month of being on the ketogenic diet, but so far it seems to be working. We did have one trip to the ER during the transition, but other than that we have seen improvements with Charlotte. We aren’t getting calls weekly from school about her having dizzy episodes or seizures, she has more energy, and she is doing better in school. We are still pretty new to this, but it isn’t as overwhelming as it once was and I know as we continue on it will become second nature. Charlotte has been a rock star during this, she doesn’t ask for sugary treats, and knows she can’t just eat anything she wants. She loves to help me make her breakfast every morning (she will even correct me if I miss something), and enjoys making her snacks as well. Her little sister recently tried to give her a Cheerio and Charlotte told her “no thank you, I can’t have that, it isn’t on my diet.” It can be heartbreaking to hear your five year old say, “I’m on a diet,” since the word “diet” is traditionally thought of negatively, but it makes my momma heart proud. She is aware that the keto diet makes her body feel better and it is helping her not have seizures, and what other diet allows you to lick the butter clean off your plate? ;)

Keto Super Stars: Meet the Lewis Family

By: Laura Lewis (aka Super Mom)

In April of 2019, my daughter Stella was found unresponsive in her crib at the age of 2 years old. She was completely stiff. After an ambulance ride and an ER visit to the children's hospital, we were told that she had a febrile seizure. Months later, in August, September, and October it happened again. After the seizure in October, she was diagnosed with epilepsy and put on Keppra. Within 3 days she stopped being able to walk properly…this is where our journey began. Over the next 2 years we did every genetic test, MRIs, countless EEGs with no answer as to why Stella was having seizures. We tried 9 different medications and cannabidiol (CBD). Stella officially was diagnosed with intractable epilepsy. We asked 3 different neurologists about the ketogenic diet and were told that her situation was not severe enough and it would not help her, until we met Dr Koh. We began our keto journey in January of 2022.

What was your main reason for pursuing the ketogenic diet?

After 9 failed medications for various reasons (side effects, increased seizures, etc), we were told that Stella would be a candidate for the modified Atkins diet (MAD). We were referred to the ketogenic diet clinic at Children’s Healthcare of Atlanta (CHOA) and met with the physician and dieticians. 

What other treatments have you tried and stopped in the past?

Stella has been on the following medications in various combinations and dosages to attempt to control her seizures. 

• Keppra

• Trileptal

• Klonopin

• Zonegran

• Vimpat

• Depakote

• Cannabidiol (CBD) 

What is Stella’s ketogenic diet prescription?  

We aim for 150 grams of fat a day and no more than 35 grams of net carbs. Stella averages between 1500-2000 calories/day. 

What is a typical day of eating for Stella on her ketogenic diet plan? 

 She loves the Birch Bender Keto Toaster Waffles so she usually starts with those and some bacon. I also give her berries and add heavy whipping cream.  

Lunch can be her keto pizza, keto ratio yogurt with some MCT oil added in, cucumbers and mayo and then some berries. She loves fruit - it’s her favorite thing so I usually give her around 10 raspberries or blackberries. 

Dinner is usually whatever we eat with a lot of added butter, or I order from Factor 75 because they have keto meals and it’s so easy. Everything is grass fed, no preservatives, no refined sugar and she loves them. She 

What are some of Stella’s favorite ketogenic meals/foods? 

 Stella loves a keto pizza! I get the cauliflower pizza crusts from Trader Joe’s, put butter on it, add 2 tablespoons of Rao’s Marinara Sauce, loads of full-fat mozzarella cheese, pepperoni and bacon on it and bake it. It’s a total of 4 grams net carbs and she feels like she is eating pizza. 

She has always been a good eater and has always loved veggies and “dip” so I give her cucumbers with mayo and ranch seasoning. She loves that! Plus to make it easy I buy the Kirkland Signature Guacamole single serve cups and add 1 tbsp of solid butter to it. She eats it right up with a spoon. 

How often do you check ketones and what level of ketosis is Stella in on her ketogenic plan? 

Stella ranges anywhere between small/low ketones (mostly in the morning) to the large/high ketones later in the day. She mostly hovers around the moderate level. 

 We check ketones twice a day now. When we first started we checked a lot more frequently, but since she’s been consistently on the diet and in school, we have reduced the frequency of checks.

What are some of the difficulties you encounter with the ketogenic diet and how have you been overcoming them? 

The most difficult thing for us is that Stella has a little brother who is 2 years old and a super picky eater. She sometimes wants what he has or at school if someone has birthday treats, she wants to be able to have it. Ultimately, the biggest challenge is planning ahead and being prepared before the event arrives. Another challenge was focusing not just on lowering carbs but also dramatically increasing her fat intake. At first, I did not realize that the fat intake was the most important part. 

What has been the best thing you have seen as a result of the ketogenic diet?

After meeting with the doctor and dietitian at CHOA in January, we started the diet in mid-February. The biggest change we are now just starting to see is her cognitive awareness. I had read on many Facebook groups, and so many other places that the diet would change cognition immediately. This was not the case for us. It took us a good 8 weeks until we started to see a difference. Stella was always extremely active. She never wanted to sit down and now she seems a lot calmer and her sleep is better. 

What do you wish you had known at the beginning of your epilepsy journey that you know now?

In the beginning of this whole epilepsy journey, I wish I would have known to fight harder to try the ketogenic diet. I wish I would have challenged the doctor’s opinion and asked to be referred to the keto clinic instead of believing that it would never help. In the beginning of the diet therapy, you may see an increase in seizures but do not let this discourage you. Keep in mind that it’s important to tweak the diet for your specific person or child. There is no one size fits all!

What is a piece of advice that you would give to families who are thinking about starting the diet or who have just started?

GIVE THE DIET TIME TO WORK! Be prepared that you will be in the kitchen more often and you need to plan. My husband and I were always on the same page about starting her on the diet, but I do not think that we approached it realistically. We were looking for an immediate change and would get frustrated when that was not the case. While she is still seizing periodically, it has only happened while she has been sick, which is typical for epilepsy. 

It's not a one size fits all, some people need to be on a dose of medication and the diet, which for us is the case. She is on a minimal dose of medication, and we feel like we are getting our kiddo back. Give yourself grace while figuring it out. It is a huge adjustment and change of lifestyle so try to be patient and kind with yourself while going through it. If you're willing to give the meds with all the crazy side effects a good try, why not do something that is a more natural route. The effort is worth it. 

If you would like to be featured on our blog and/or social media, please reach out to us at info@ketohope.org! We are always looking for inspiring and amazing stories! 

If you would like to chat with the Lewis family for recipe ideas or support, please contact Laura at Laura.Lewis07@gmail.com or follow her on Instagram @lauralewis07.  Also check out our Family Support page to be paired with a knowledgeable and supportive parent on your ketogenic journey!

The Ketogenic Diet through the Eyes of a 7 Year Old

Featuring Super Star: Jonah and Daisy Argudin 

Interviewer: Laura Dority MS RD LD 

We had the privilege of interviewing one of my favorite patients - Jonah recently. Our goal was to dive in and really get an understanding of what the ketogenic diet means for a 7 year old.  We did provide him with the questions ahead of time so he could prepare his answers and not be so nervous but ultimately these are uncoached answers that were not altered by an adult! The innocence and honesty of a child is truly amazing! His mom, Daisy, also joined us on the interview to answer a few of the more technical questions.  We would love for you to  watch, it’s a short 20 minutes but if you do not have that option I have also included Jonah’s answers to our questions below.  

Meet Jonah

Jonah is a 7 year old with absence epilepsy. He was diagnosed at age 4 and has since found incredible seizure benefit by following a ketogenic diet – specifically a modified Atkins approach. To make a restrictive diet even more complicated, Jonah is also allergic to dairy and eggs.  Despite these challenges, Jonah and his family slay the diet and are an inspiration.   

Why are you on the keto diet and how does it feel to have a seizure?  

Jonah: It helps my epilepsy. When I have a seizure sometimes my brain turns off. When I’m having a seizure I feel like I am standing there doing nothing but I can still hear. Everything is blurry which lasts until I hear something or until I get out of the seizure. I cannot see during the seizure so I’m unaware of what is going on around me. After the seizure I’m not tired and I just go back to doing what I was doing before the seizure. Sometimes I lose focus though.  

Can you describe how often Jonah was having seizure before the diet compared to now?   

Daisy: When we first started the diet he would probably have 10-12 seizures/hour. When they did his EEG it showed he was having hundreds daily. Now he can go a couple of hours and not have any and we also go some days without any seizure activity which is fantastic.   

Is Jonah on any medications to control his seizure?  

Daisy: No he is not- he is controlled strictly with diet and has never been on any seizure medications.  Ketogenic diet was our first choice.  

Did you get any pushback from your medial team about doing diet as a first-line therapy? 

Daisy: We came into the appointment pretty sure that we wanted to do the keto diet so the pushback that we did receive we pushed back just as hard. Given that he could not have dairy or eggs it was already restrictive so doing the keto diet didn’t seem any more restrictive to us. I think when the doctors realized we were willing to put in the work with the diet we didn’t get as much pushback.   

What non keto food(s) do you miss the most and what substitutes for these foods has your mom made?  

Jonah: I miss Red Robin and I used to get a burger with pickles and fries. Now my mom makes a burger with low carb bread from Aldi with mustard and ketchup as well as cucumbers and oranges (small amount) and oil (which he drinks out of a medicine cup and claims it taste like coconut).  

How do you and your brother help your mom in preparing your special diet?  

Jonah: My brother will get the food out for me and I can measure on the scale and make some of my meals. I also make sure to eat all my food.  

What do you wish that I knew about you as you dietitian?  

Jonah: There is a superhero kid named Kid Keto. He fights the cells that makes the seizures so that he can help everyone from not getting sick. I made a comic book with this character. He looks like me but with a mask and I gave him a cape and a little logo – a K.  The building he lives in is purple to support epilepsy.  

As your dietitian how can I support you and your mom better?   

Jonah: You can look for more dairy and egg free products so my mom doesn’t have to read the label every time.   

Let’s talk about special events.  What special foods or ideas can you share regarding parties on a keto diet?  

Jonah: My mom makes and packs muffins for me as a treat and at the store there is gum that I can have.  The muffins are really sweet but at the same time really soft.   

Daisy: I use almond flour, coconut flour, coconut oil, chia seeds, a little almond milk and then bake them.  They tend to be a little dense so we cook them in silicone molds so none of the oil bakes out – once they cool off the oil goes back in the muffin so we don’t lose any. I pack them in a to-go- box and then the gum is used like a candy.   

What is the hardest part about following the ketogenic diet?  

Jonah: The hardest part is sometimes not eating foods that I like and missing the foods I used to be able to have. My mom tries to substitute a lot of things.  

What are some of your favorite keto foods?  

Jonah: Dang bars which I love and also pepperoni which I really like. The Dang Bars I eat are the chocolate (Crazy Rich Chocolate), coconut (Toasted Coconut), and lemon (Lemon Matcha). My favorite fruit is plums and my favorite vegetable is cucumber with spicy red pepper. A favorite meal (photo below) is shredded up zoodles (zucchini) with tomato sauce, oregano, and meat.  

Here are a few of your other keto meals – can you describe them?

The first one is a pizza roll-up which is a low carb tortilla with pepperoni rolled up. We combine it with pork rinds and oil.

The second one is my vitamins which I only have at breakfast, toast using low carb bread from Aldi with butter. Lots of butter because I really like butter. It also has some pork rinds, raspberries (small amount) and a plain tea finished off with some oil.   

What piece of advice would you give to other kids on a keto diet that are just getting started?  

Jonah: Well first I would say you are doing a good job and then I would say that you have seizures now but one day you won’t have seizures.   

Do you have any last words of wisdom to share with us today?  

Jonah: All I can say is I had a really good time.    

Daisy: I would say if you are even considering the diet – try it or at least look into it. Investigate and find out if it will work for your family. Don’t be afraid. It is hard! It’s not easy - especially at first because it’s learning a whole new language but it is worth it. Being able to avoid medication especially with all the side effects which is always the number one fear of parents. You hear your son or daughter has to start taking this medication and you immediately go look at the side effect list. Try the diet! If it works for your family, then great. If it doesn’t, then you have lost nothing but gained knowledge.   

Final Thoughts:  

The Keto Hope Foundation has the Keto Friends initiative so if you are new to the keto journey go to http://ketohope.org/ and go to the Family Support page. We can match you with a family like Daisy and Jonah who are awesome at the diet. They can offer you guidance and support. On the other hand, if you are a family that is experienced with the diet we are always looking for more support parents. So either way newbies or oldies, we are looking for you – we are ready to support you. 

Meet McKinley, CDKL5 Warrior!

By Yessy Abolila

Our daughter, McKinley, was born at 40 weeks and one day. In every sense, my pregnancy was by the books. No complications while she baked in my womb and no complications during birth. She was born at a healthy 8 pounds and 11 ounces. I was able to breastfeed immediately and she gained weight perfectly. I was thankful for it all and my worries seemed to vanish once she arrived. Life, unfortunately, can throw you a curveball.

At 3 weeks old, we started noticing these odd movements. We first thought they were startle reflexes, but after a few days of consistently seeing them, we called McKinley’s pediatrician on a Saturday morning, and she suggested we take her to the emergency room as a precaution. The ER staff was kind and assured us it was reflux at first. However, once they witnessed those same movements, they admitted McKinley and our journey into the world of epilepsy began.

Although a brain ultrasound and an MRI confirmed McKinley’s brain was physically normal, an EEG would confirm she was in fact having seizures. The following weeks were a blur of second opinions, medications, more EEGs, and eventually, genetic testing. The week after Thanksgiving, when McKinley was barely 9 weeks old, we received her diagnosis—CDKL5.

Cyclin-dependent kinase-like 5 is a genetic disorder that essentially affects how one develops neurologically. One of its main characteristics is hard to control seizures. It is a rare disease and not fully understood. There is a wide spectrum as far as severity and no two children are alike. Some may never walk, talk, or be able to hold their head up unsupported. As one can imagine, the news was difficult to accept. The best advice we received was to become our daughter’s advocate. With no cure, we began our research to find the best treatment for her.

I had first heard of the ketogenic diet as a treatment for epilepsy when McKinley was around 3 months old. I brought it up to her neurologist, and he said it would only be successful with a feeding tube. Hearing that, I was disheartened but looking back now, I realize he simply didn’t have experience with it. Although the diet has been helping children since the 1920s, in my experience, it’s not a common course of treatment in South Florida.

I finally convinced her team of specialists to give it a shot after McKinley was on her third or fourth hospital stay at 4.5 months. She had already failed four AEDs—Phenobarbital, Keppra, Trileptal, and Topamax. Her episodes were changing and I suspected infantile spasms. I researched and printed out articles from medical journals showing that the diet could successfully be used to treat IS, instead of the first line treatment of ACTH or Prednisone.

With her specialists finally on board, we began the diet inpatient and over the course of 12 days, I stopped breastfeeding, and transitioned her to a 4:1 KetoCal formula. Within two weeks of starting the diet, McKinley was seizure and spasm free. Results that I was grateful for. She started the diet while on Trileptal and Topomax—we weaned Trileptal first. Knowing what I know now, I wish we had also weaned Topomax in those first few months. She responded well to the keto formula—-I was allowed to add a splash of breastmilk to each bottle until my supply was depleted. We also slowly introduced purées.

We enjoyed 10 glorious months of freedom, until her spasms returned. Not as strong as pre-diet, but present nonetheless. We added Vigabatrin and experienced a couple months of freedom, before relentless teething caused the spasms to return earlier this year. While we haven’t been able to regain control yet, I know the diet is still helping her at nearly 20 months of age. We are working on making adjustments that I pray will eventually get her back on track.

McKinley's main source of nutrition are her KetoCal bottles. We are working on increasing her intake of purees, as her genetic disorder affects her ability to learn to eat/chew/hold a spoon, etc. I started introducing purees around 9 months old, but she would barely consume more than one ounce. She was in feeding therapy, but due to covid, we had to stop. This year, we have been able to gradually increase that to two ounces of puree per feeding. I try to feed her puree three times a day, but we've only mastered a solid two feedings daily. For the summer, I'd like to work her up to three ounces in one sitting (baby steps!). 

As far as food, she's had chicken and turkey for protein and olive oil, butter, heavy cream, avocado oil and mayonnaise for fats. Her cholesterol came back high from a recent blood test so I'm avoiding butter and heavy cream for a bit.

Veggie-wise, we're starting to expand. She loves asparagus and she's also had green beans, spinach and avocado consistently. I usually bulk make her purees, but since I've wanted to introduce new veggies, I bought an assortment of HappyBaby puree pouches to try out new flavors and see what she likes before I bulk make. 

So far McKinley's had and loved: 

- Pears, Zucchini, Peas pouch

- Pears, Squash, Blackberries pouch

- Pears, Kale, Spinach pouch

- Apples, Pumpkin, Carrots pouch

I mixed all these pouches with a full avocado and added additional avocado oil to reach her 4:1 ratio. One pouch gives me about (4) 2-ounce jars, so I'm able to freeze and thaw as needed. If it's a new ingredient, I give her the same puree 2-3 times in a row to see if her spasms increase. I actually noticed her spasms go up after consuming the Pears, Squash and Blackberries pouch, so I'll avoid squash and blackberries moving forward. I think using pouches (or pre-made baby jars) are a good way to introduce a new food, before your proceed with bulk cooking.

We've always tested McKinley's ketones using urine test strips (cotton balls in her diaper). She's always tested Larger or Large. I had read that purchasing a blood ketones meter will give you accurate results and then you can determine if a certain level allows for better seizure control. I did buy the blood meter, but haven't tested it out yet.

If I was a time traveler, I would go back in time and tell myself the following:

• Research the diet more aggressively. Read Dr. Kossof’s The Ketogenic and Modified Atkins Diet book. It’s the staple for Johns Hopkins Hospital and gives a crash course on the diet for interested parents. 

• Join keto support groups on Facebook. I would have asked questions about the potential of starting the diet with an infant and how to convince doctors to consider it, when they have little to no experience in it. 

• Research side effects of the diet with McKinley’s medications (at the time). I wish we had realized that Topomax and the diet don’t play nice together and that acidosis is a common result. We would have avoided additional hospital stays had we known from the initiation of the diet.

• If you’re not happy with your current team of specialists and their experience with the diet (or lack of), find a new team. This one may be the hardest when you’re in the thick of it. We all know too well that appointments with new doctors can be time-consuming to obtain, but I think it’s never too late to try. Post-pandemic world, it’s something I will consider as McKinley grows and her needs change.

• Trust your gut. You are your child’s parent. You know and love them more than anyone else. If your gut is saying “try the diet” (or another therapy or medication), follow it. Make the appointments, encourage the doctors, and power through it.

Since time traveling is not feasible, I write this in the hopes of guiding a family through a similar experience. I write this to share our experience, our ups, and our downs, with the keto diet.  If I can empower at least one family to speak up or try something different, then this post will have been worth it.

A note from our Keto Hope Board family

The Rushton family has been part of our team from the beginning! Whether supporting Keto Friends peer network or helping spread awareness, Xavier and his family remind us what families on the diet are looking for in their day to day life. We asked them to join our board in 2017 as official community partners and have been so thankful to have them as contributors to the foundation.

Below is their story!

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8/11/19

By Rachelle Rushton

Wow! Where to start? Our journey has definitely had its ups and downs, but it has been great to see the changes the diet has made in our son. When we first started Xavier on the diet we felt so confused!  Don’t get me wrong we have an AMAZING dietitian, but trying to remember to look at how many carbohydrates something has in it when you are not used to doing it is HARD! 

We had so many fails, I don’t want to even try to count them. And the weight loss was a huge heart breaker. We had been told that it would happen until his body adjusted but wow, just wow. That is one thing I never want to have to see my child go through again. He was so skinny, tired and cold all the time, and just had no energy at all. Then…we got into a groove and it started to get a lot easier. 

This type of diet, well for that matter epilepsy in general, takes a whole tribe of people and we have an amazing support system. Our families thought we were crazy at first but when they saw the change in him, they jumped in to help us in any way possible. We also learned to make charts, labels, and became expert meal preppers. 

I cannot say it enough, but meal prepping is a life changer for us. We are a very active family and without preparation every Sunday we would be *extremely* late to everything. It also allows us to let Xavier contribute to his lunches and snacks. He is able to pick out what he wants to have, and with a picky kid this really helps. (Recently he has started portioning out his own foods! He is a pro with a scale!)  

Epilepsy and the ketogenic diet have been real-life changers for us, but we wouldn’t have it any other way. Living with epilepsy and using the ketogenic diet as treatment is now just a part of life for us. We don’t have to think too much about what we can and cannot do with Xavier.

We have found tons of alternatives to some of our favorite foods so that Xavier always feels included. We even how our own little “cook book” with all the recipes that we have converted into keto friendly versions. This really helps when he needs to stay overnight with family, all they have to do is check out his book and whip up dinner. 

There have been times when I think what are we doing, we need help, we can’t do this anymore!  This is when we take a moment to breatheand remember that we have this, we are pros now! (Totally kidding but it is easier now). I hope a small glimpse into our crazy life can help inspire another family who is struggling with this to realize that it’s okay to ask for help.  We all need it from time to time, but the struggle is worth seeing your child improve right in front of your eyes! It has been a long journey but we will always be right there by his side whenever he needs us and ensure that he has what he needs to be successful. 

This is our story. How can we help you make yours just as great?

Ketogenic Diet: A Parent and Child Perspective

3/4/19

Looking for some insight on what it’s like to be on a ketogenic diet?  Well look no further!  We are so excited to release our newest webinar that is geared towards caregivers and patients who may be considering a ketogenic diet for treatment of their epilepsy or who are already on the ketogenic diet but need some tips and tricks to stay on track.  Trust me, we know that staying compliant on this restrictive diet can be tough and we applaud you for your efforts!

We’ll dive deep into the daily lives of the Rushton family who have a son, Xavier, on the modified Atkins diet (MAD) for epilepsy. The webinar covers a lot of great information in about 60 minutes-feel to free to take a break and come back!  Hopefully it can provide you with at least a few tips on how to make the ketogenic diet easier for you.  

Topics covered: 

·      Xavier’s Favorite Keto Friendly Foods

·      Substitutes to Kid Favorite Foods (pizza, bread, crackers) 

·      Importance of Setting Clear Goals and Expectations with Your Healthcare Team 

·      Appropriate Monitoring and Follow-Up When on a Ketogenic Diet

·      Possible Side Effects and How to Prevent Them 

·      Resources, Resources, Resources 

·      Several Frequently Asked Questions Answered by A Family that Lives Keto Every Day

o  How to get other family members involved? 

o  How to be successful with the school? 

o  What to do for holidays and birthday parties? 

o  Many, many more!!!

If you are looking for more support, reach out to us via our Keto Friends initiative page to see if we can pair you with a support buddy.   If you have questions for us or for the Rushton family after listening to the webinar, leave a comment so we can get back to you! 

-Laura