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? ;)