We are pleased to share today’s special guest blog post by Jessica Lee, a keto mom and co-founder of the Keto Hope Foundation. Jessica provides a parent’s perspective of the ketogenic diet journey and what led her, along with her husband and their daughter’s dietitian, to create the Keto Hope Foundation! Thank you so much for sharing your story with us, Jessica!
“There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable”
There are moments in our lives that we will vividly remember, crystal clear, no matter our age at the time or the time elapsed since. For some of us it is a social event like a wedding, world events such as 9/11, or personal achievements such as hiking Mt Kilimanjaro. For me one of those moments is the day I knew my daughter had infantile spasms*. To his credit, my husband made the diagnosis from YouTube videos the day before we saw the neurologist. We lay in bed that night, knowing, holding each other. It was quiet but tears flowed slow and steady. If you google “infantile spasms” the most often cited piece of medical literature is a study with depressing statistics that would make anyone feel hopeless. The possibilities or lack of possibilities swirled, clouding my mind until I couldn’t even imagine the future. Would she ever smile, laugh, say “ma-ma”, walk, dance…? What I was imagining had been unimaginable 24 hours earlier.
We were quickly admitted to the hospital the next day and an overnight EEG confirmed what we already knew. At that time at our institution, ACTH was the first line medication and we were trained to perform the injections and discharged home. They initially worked. And then they didn’t. We tried another round but again the spasms returned. Antiepileptic drugs were started but seemed to make the spasms worse. Unimaginable. These medications were not controlling her spasms. As a physician myself I have been taught to believe in evidence based medicine but the best evidence was not applying itself to my daughter’s situation. Quoting statistics takes on an entirely new meaning when you are the exception, the “1” in the ratio.
After consulting our medical team, the next decision was to start the ketogenic diet during a hospital admission. I cut the “footies” out of her pajamas so she wouldn’t have to be undressed and awakened for glucose heel sticks at night. I questioned the dietitian about food options for a now eight month old and voiced my concern over artificial sweeteners. By this time, I had read many scholarly articles but couldn’t find an exact mechanism of action for the reason this diet was supposed to work, so I have to admit, I was skeptical. BUT…within days we saw a significant decrease in the number of spasms and about a month later she had her last spasm. Her LAST ONE. Unimaginable. Feeding her a (strict) high fat diet had done what medications failed to do. Was that even possible?
We kicked into gear. We learned how the calculations for meals worked and starting planning our own meals (with approval from our dietitian). I took some time off after I graduated residency and spent hours each week prepping meals by steaming vegetables, blending them into purees and freezing them in small portion sizes. Her first birthday cake was a mini two tier chocolate cake made with KetoCal and cocoa powder. All the while her spasms stayed away. More importantly, she was smiling, then laughing, then saying “ma-ma” … All of the things I had been scared to imagine were becoming a reality.
The ketogenic diet gave us hope. A chance to imagine things that we couldn’t before. My husband began imagining a way to make the diet a little easier on families. I began imagining a network of parents who could make someone feel a little less isolated. Our ketogenic dietitian Laura Dority began imagining processes to increase efficiency and adherence to the diet. We began imagining the Keto Hope Foundation in those first months of treatment. It took us a couple of years of planning but in 2016 what we imagined became a reality.
Keto Hope Foundation is a 501(c)(3) non-profit organization dedicated to helping families on the ketogenic diet for epilepsy. While other well established foundations have done an excellent job for awareness, research funding, and general resources, we wanted to address some areas on a more personal level.
- After experiencing the significant time required for planning and preparation of meals on a daily basis, the idea of having a pre-made meal option available seemed an obvious focus. We spent countless weekends in the kitchen with Laura modifying recipes and taste testing, and ultimately decided to launch the Keto Bakery with a cheddar cracker and a bread mix (currently available for order online). We shipped out our first orders just three months ago and the feedback so far has been very positive! We are looking forward to launching more products in the future.
- Our Keto Friends network aims to match families based on diagnoses or age of child and provide them with a personal connection to trade recipes, ideas, or just lend an understanding ear. This is something I would have loved as a new mom navigating the ketogenic and epilepsy worlds. Unfortunately, even a few short years ago the ketogenic diet Facebook groups didn’t exist as they do now, and to be honest, I tend to be a private person so posting my questions, fears, or even triumphs to a group of 1000 strangers was not appealing initially. I think it takes some people time to open up so having a one-to-one confidant can be very helpful especially in the early stages.
- Educational opportunities for ketogenic dietitians and pediatric neurologists are essential to furthering our understanding of the diet and its applications. We hosted our first webinar in May of this year and have another planned for this fall. Future goals of our Keto RD initiative include standardizing an accreditation for ketogenic dietitians, building a consensus for therapeutic protocols to initiate and maintain the diet, and developing a mentoring program for new ketogenic dietitians.
Today, our daughter is back on a traditional Western diet but I will never forget the months of measuring to the 0.1 gram or traveling with our scale and a jar of coconut oil in the diaper bag. Although we don’t fully understand how this diet changes the brain’s metabolism in such a miraculous way, it is no longer unimaginable. Imagine instead the possibilities. Join us on this journey at www.ketohope.org.
*KetoCal is not indicated for infant use.