Our daughter, Katie (9 years old), loves to swim, ski, read, sing, participate in Irish dance, ballet, and team sports. She lives in Montana with her younger sister, Laura (6 years old), and her mom and dad who work full time. She travels with her family to explore national parks, camp, and visit extended family members. Katie is an incredible person and a spirited adventurer who has epilepsy that has been controlled with the ketogenic diet for the past 5 years.
When Katie was just 3.5 years old, she experienced her first tonic clonic seizure; her second followed just one week later. Emergency room doctors started her on an AED, referred her to a pediatric neurologist, scheduled her first EEG (abnormal) and MRI (normal). For a couple of months her seizures subsided until she rapidly developed other forms of seizures—blank stares, head drops, knee drops. Within a period of one week, she escalated from having one or two seizures to dozens daily and she began to experience secondary injuries. A panicked trip to an out of state pediatric epilepsy center for 24 hour EEG/video monitoring left Katie with hair full of glue and left us with information that she was experiencing 50-60 subclinical seizures daily, a plan to continue increasing her current AED to its maximum level, instructions to purchase a helmet, and the epileptologist’s warning that her developmental delays would continue.
But what about the ketogenic diet? We had asked this question from the beginning and always received the same answer—“the diet is so difficult; try the medications first.” But, this ran contrary to what we had read about Charlie’s story, the successes at John Hopkins, and the experiences posted by parents on ketogenic diet support groups. All encouraged parents to start the diet sooner—before the cocktail of AEDS was prescribed.
It made sense. The diet’s effectiveness could be determined within a matter of weeks—a similar time frame for most AEDS. If it worked, we could wean her off the AEDS and lift the horrible mental fog that contributed to her developmental delays. We thought, if kids can learn to live with diabetic diets, why not a ketogenic diet? If other parents could learn to adapt, why not us?
It worked. Katie began the keto diet at age 4, never experienced another seizure, took her last AED 4 months later, and began to make developmental strides again.
Our family adapted. We still laugh about Katie’s first keto meal at home—it took us 45 minutes and a variety of bargaining ploys (including eating in a canoe) just to get her to eat a ½ piece of bacon, a ¼ of a scrambled egg and 4 ounces of her cream drink. Now, we have to negotiate to slow her down and take more than 45 seconds to finish a meal.
We share Katie’s story as a way to say thank you to all the parents who took the time to share their child’s success with the keto diet and lead us in the right direction. We hope Katie’s story does the same for you.