Last month, as part of my partnership with Children’s Mercy Hospital, I had the opportunity to interview two of the experts from their Comprehensive Epilepsy Center, Lori Cull-Deshmukh, Masters Social Worker, and Lindsey Thompson, Nutrition Services Manager. Our focus was on the Ketogenic Diet, how it provides healing through ketosis, and how their team helps ease the challenges families face as they transition to this new way of living.
However, before we get into that, I want to introduce you to a friend of mine…
This is Brock.
Brock is one of the sweetest, happiest 3-year-old boys I’ve ever met. (His older sister plays softball with our girls, so we have the pleasure of hanging out together quite often.)
When Brock was two months old, his parents, Rebecca and Brandon, started to notice that something wasn’t quite right. Brock was struggling with occasional episodes of rapid eye movements, lethargy and had a few grand mal seizures.
Brock’s parents went from specialist to specialist trying to find answers. This went on for 2 1/2 years, but no one was able to help their sweet boy. Eventually, they ended up at The Comprehensive Epilepsy Center at Children’s Mercy Hospital in Kansas City. They met with Erin Fescke, MSN,RN,CNRN,CPNP, Epilepsy Nurse Practitioner. From the moment they arrived at the clinic, Erin took action. She wanted to find answers for Brock and his parents. After being monitored using Children’s Mercy’s state of the art equipment, the expert staff of doctors and specialists confirmed what Rebecca knew deep down in her heart. Brock was in fact having seizures. But not just a few seizures. In the 72 hours Brock was being monitored, he had over 90 seizures in just a 5 hour period. As a fellow mama, I can only imagine the emotional roller coaster that Rebecca was going through at this time.
Over the next few days, Rebecca and Brandon realized that their life was about to be turned upside down. You see, Brock was diagnosed with a Glut-1 deficiency. This means that Brock’s brain is missing the gene necessary to process glucose (carbs/sugar) as a fuel source. His brain was literally starving for ketones (healthy fats). They were also told that, at this time, the only way to treat Glut-1 deficiency was by putting the patients on a very strict ketogenic diet.
What exactly is a ketogenic diet, and how does it control seizures? Let’s consult our experts from Children’s Mercy…
“The ketogenic diet is a treatment option for seizures that are resistant to typical pharmacological (medicine) treatments. Candidates for the ketogenic diet have typically failed 2 or more appropriate medications and their seizures are then considered “intractable”. The brain can use one of two sources of fuel for energy: glucose (carbohydrates) or ketones (fat). By limiting carbohydrates in the diet and giving plenty of fat, the brain is able to switch metabolism and burn primarily fats/ketones for energy. We don’t know exactly how the diet works to control seizures but there are several hypotheses: 1) glucose is needed for a “quick” form of energy to fuel a seizure, so when it is unavailable for use, seizures decrease, and 2) ketones have a “calming” effect on the brain (through decreased excitability in the brain, neurotransmitter changes and possibly antioxidant effects). The ketogenic diet has been shown to decrease pathways involved in the development of epileptic pathways in animal models but we are not sure we can say it “heals” the human brain at this point.” —Lori Cull-Deshmukh and Lindsey Thompson
For the Simmons family, knowing that they could possibly control their son’s seizures with diet, instead of pharmaceuticals, was a huge relief. However, they had no clue where to start.
Thankfully, Children’s Mercy Hospital doesn’t just give you a diagnosis, a take-home sheet, and send you out the door. They work as a team with the family, school and other caregivers to make sure everyone knows what to do, and how to do it.
“The family will first meet with a medical team comprised of an epilepsy provider, dietitian, chef educator and social worker before proceeding with the diet. The initiation will begin with a 4-5 day (hospital) admission to start the diet, provide education, start the meal planning and work on behavior and home/life structure changes. After the admission, the family has regular contact with nutritionists to ensure all dietary needs are being met, including meal changes. The family also has access to group and individual support services.”
To me, learning about the services offered by Children’s Mercy blew my mind. However, there was still one thing I was curious about. What is Children’s Mercy doing to ensure that the patient’s entire community stays on board? After all, as you’ll read below, just one mistake can derail a lot of progress…
“The families have calculated recipes and snacks specialized for their child. Any introduction of sugar or carbohydrate (even the amounts in liquid or chewable medicines or vitamins) is enough to throw a patient out of ketosis and put them at risk for increased seizures. We do a lot of education with the patients and families at the start of the diet (and beyond) to empower them. We educate families that their child’s “food is their medicine”. This helps parents, grandparents and teachers to understand that the diet restrictions are not to “be mean” or leave the child out. We encourage families to plan similar meals to what their child on the ketogenic diet will eat and to plan ahead for parties and celebrations so that their child can feel included. We have plenty of ketogenic-friendly snacks, and even dessert options, available to families for special events. We find that a lot of kids (even as young as 6!) start to take authority of their own diet because they know it makes them feel good and not have seizures. We encourage families to educate anyone that will be around their child (school, teachers, neighbors, sports friends) with literature and about the ketogenic diet. The Comprehensive Epilepsy Center at Children’s Mercy Hospital Kansas can also assist with the education to school and family.”
They even host Keto-friendly cookie decorating parties!!!
So, how is Brock’s condition now? He is currently a happy, healthy preschooler that has not seemed to experience any seizures since beginning the diet. He drinks HEAVY CREAM with his meals to keep his fat levels up, and is still able to enjoy small amounts of grains and pastas. (Contrary to popular belief, Glut-1 has nothing to do with gluten.) As long as his ratios of fat:protein:carbs stay where they need to be, there is no reason why he shouldn’t be able to enjoy the same quality of life as his peers.
As for Rebecca, she is now a Keto baking expert!
Thanks to the support team at Children’s Mercy, she’s been equipped with everything she needs to make food that tastes great, and that gives Brock the fuel his brain and body needs. She knows that she can always reach out to Lindsey with nutrition questions, and if she needs a new recipe, she can reach of to the on-staff Keto Diet Chef, Rachel Finn. (Rachel is the link between the hospital/clinical setting and “real life” for the families on the Ketogenic Diet. She is always coming up with recipes that “normalizes” the Ketogenic diet experience, and understands the challenges these families face on a daily basis).
Most importantly, Rebecca feels loved, supported and confident. Together, the Simmons family, and the Children’s Mercy Epilepsy Center staff, will keep Brock safe, happy and healthy for years to come.
Learn more: For more information on conditions that may benefit from using ketones as fuel, please follow this link for a list of resources. You can also watch this YouTube video to see my own personal journey.
Disclaimer: The information presented in this post is for educational purposes only. It is not intended to diagnose, treat or cure any medical condition without the help of a trained medical professional, such as the staff at Children’s Mercy Hospital.
Additionally, as an ambassador with Children’s Mercy Hospital, I have been compensated for this post. I consider it a great honor to be able to share my friend’s story with you on this platform, and truly believe in the power of everything I’ve written. It is a blessing to have such a remarkable children’s hospital in my community.