Our family’s journey with epilepsy started in 2007 with an isolated seizure. Our son Cole, who was just 2 years old at the time, doubled over in early September with a full body seizure. We had him checked out and thought we were in the clear. By the time Thanksgiving rolled around, though, Cole was having over 100 seizures per day, of multiple kinds. We were desperate to get help. We asked my brother, Gary, who is a surgeon at Regions Hospital here in St. Paul, for a suggestion. He told us to go to Gillette Children’s Specialty Healthcare. We were referred to Dr. Beverly Wical, a pediatric neurologist at Gillette.
We tried different medications, none of which seemed to work. Gillette suggested we get a second opinion, which we did. That doctor from a different facility told us “pad your kitchen floor and get him a helmet. I’ve seen this many times. This is as good as it’ll ever get.” We were devastated. That was the Friday before Christmas break of 2007. Dr. Wical was leaving for two weeks and we were scared. She cleared her schedule that Friday afternoon and met with us for over two hours. I remember during that meeting she held up her hand and told us that of the patients she has seen with similar severity of seizures, she could count on one hand the number of patients that are functioning at average or above-average levels.
I know this doesn’t sound like the best of odds with the information we were getting, but it gave us hope that Cole could be one of the five. She proceeded to tell us that we’d keep trying new combinations of treatments/meds and hopefully we’d find the magic combination that would work for Cole. The doctors and staff at Gillette worked continuously to find that magic combination.
While Gillette wasn’t able to give us the answers as to what our future would hold, we left that meeting not feeling hopeless.
We got through Christmas, but Cole was still having seizures. We were worried about our son, our family, our finances – wondering if we’d be able to pay for Cole’s medical care. Could we keep our business solvent with one of us having to be with Cole 24/7 and having two other young daughters to care for?
By the end of January, 2008, Cole was still seizing and meds weren’t helping. We talked with Gillette about trying the ketogenic diet, a highly specialized diet that can help treat certain types of epilepsy. They wanted a 120 day commitment. At that time, 120 days seemed like an eternity.
My wife Tammy’s father, Merle, had come to all our appointments with us and helped with Cole so both Tammy and I could concentrate on the doctor. When we got home and said were going to try this high-fat, low carb, low protein, low calorie diet to control seizures, our families said they didn’t see any way that bacon and butter would stop Cole’s seizures. But Merle simply said, “They don’t have any other choice.” And that was it. We got started on the diet.
We noticed immediately some clarity. It took 90 days, but on day 90, Cole went seizure free for a whole day and, essentially, hasn’t looked back.
Cole has been seizure free for just over six years. As we were preparing this blog post, we realized that Karri Larson, our Gillette dietician, has approved everything that Cole has eaten over the last six or so years.
We’ve taken the diet on road trips to Florida, Branson, Texas, Sedona, The Grand Canyon, Yellowstone and Glacier Parks as well as many times to Lutsen on Minnesota’s North Shore. Cole is now 9 years old and thriving. He is in a partial Spanish Immersion program in Forest Lake Public Schools. He is in Boy Scouts, likes to camp, hike, play Legos and Skylanders. He’s active in his church and loves to swim.
Thank you Karri. Thank you to Shani Norberg, M.D.,Nancy Kammer, M.D., Beverly Wical, M.D. and so many of the Gillette nurses and support staff that have been so helpful and have given us our life back.