Olivia, are you okay? Olivia, do you remember where you were going? Olivia, can you wake up?
The signs were there for months--unusual incidents of blank stares, disorientation and morning exhaustion. Later, we learned that the children at school were familiar with Olivia's facial drooping and excessive drooling. Olivia dismissively reported seizures that had occurred daily, but at the time she didn’t have a name for them and they disappeared quickly. So that morning, when Olivia slumped on the reading rug and began twitching head to toe while drooling, no one seemed afraid. Her friend simply called out, “Olivia is doing that thing again, but this time she is not getting up.”
Maybe that's why our eight-year-old Olivia so casually described her symptoms in the emergency room that Tuesday in April, to the caring and calm Dr. Rina Goldberg–who then proceeded to explain Benign Rolandic Epilepsy and EEG's, and why an MRI was needed to rule out other possibilities. Within hours, Olivia was hooked up and showing centrotemporal spikes that looked like crayons gone wild. In the blink of an eye, we leapt into the whole new world of epilepsy, Olivia handling everything in stride with her usual charm and joy. Since this diagnosis is commonly outgrown and easily controlled with medication, Olivia would surely return to school in a few days and this would be behind us.
Unfortunately, as the months passed, our second-grade shock grew into third-grade frustration, while we watched our vivacious Olivia fade behind a fog of blank stares. She also experienced distorted facial appearances, learning struggles, difficulty controlling hunger and emotional meltdowns. With the help of our doctors--and iterations of medications--as well as websites and strong school support, we desperately tried to pull our Olivia back to us. Failing the fourth grade was not an option. Medications were working to calm many of Olivia’s more aggressive seizures, but they carried unacceptable side effects. After much research, we found compelling information on dietary regimens that could be helpful to the brain. We looked at the Perfect Health Diet, the Paleo Diet and the Atkins Diet. Under the cautious guidance of Dr. Orrin Devinsky, we chose a therapeutic diet--the ketogenic diet-- specific to childhood epilepsy, but not typically used for Olivia’s type of diagnosis.
At NYU, we started the diet, and we experienced not just one, but all of the possible difficulties of ketosis. We knew the struggles ahead, but we were determined for this to work. Olivia wanted to feel better and was on board!
After the hospital stay, we entered the detailed phase of weighing and measuring, and living a grain-and sugar-free lifestyle, which required a great deal of daily planning and preparation. We used the Charlie Foundation guide, the Keto Cookbook and customized recipes recommended by Dr. Devinsky’s dietician, Courtney Glick. To manage Olivia’s fat and protein ratios, we filled containers with 150-calorie snacks and 500-calorie meals. We tested her blood glucose and ketones morning and afternoon--relying on a magic combination of fats from MCT oil and organic heavy cream. For more palatable menu choices, we removed the fat from the recipes and found it easier to have Olivia swig the MCT oil and heavy cream like a dose of medicine. As a family, we now avoid foods that contain chemicals, natural flavorings, citric acid and spices that have dextrose. Over time, when you make up your mind to do anything, you find the necessary patience and resources. We all feel better and we have learned to love new foods like lettuce wraps, olives, almond butter and coconut flour.
Nothing has been easy, but all of it has been worth the results. Olivia is back! Miraculously, in addition to feeling emotionally stable, she has seen her stamina and desired weight return, and she has regained her math and reading skills. If you didn't know Olivia's history, you would never suspect a problem.
We owe a debt of gratitude to our amazing Olivia, who is an incredibly spirited young girl. Without her courage and commitment, success would never have been a reality. Our wonderful family and friends have supported and encouraged our efforts; and through this all, we found our way because of the determination of our doctors, nurses and many dedicated Deerfield Elementary School teachers and administrators. Epilepsy may not be gone, but we are back on track in finding a more manageable way to live seizure-free.