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!