CRYSTAL LAKE – Little Nevin Runge was just 10 months old when she had her first seizure brought on by a high fever.
For seven long minutes, the tiny baby, now 9 years old, shook with convulsions.
Two months later, she had another seizure, again the result of a fever.
Then nothing, no seizures for a few years. Her parents and her doctor thought the worst was over.
But at 2 1/2 years old, the toddler had a seizure that lasted a full hour and a half.
An EEG later revealed that Nevin was having upwards of 500 seizures a day.
Doctors tried different medications to curb her seizing – all of which had dreadful side effects on the young girl. One drug made her cringe at touches and cuddles, another caused her to have balance issues, another a rash. One gave her intense sensitivity to noise, and on another she would cry uncontrollably.
Eventually, Nevin's doctor wanted to start her on a new medication, but first her parents, April and Chris Runge of Crystal Lake, had to sign a waiver because the medication could cause serious side effects later in life. That was April Runge's breaking point.
All along, April Runge heard about a medical therapy for seizures called the ketogenic diet. All along, Nevin's doctor said it was a last resort.
April and Nevin Runge recently sat down with Northwest Herald reporter Chelsea McDougall.
April Runge: Each time, we said, 'Is it time to try the diet?' And our doctor said 'No, let's try this.' Finally, he said let's try this drug but you have to sign a waiver for aplastic anemia. ... I said, 'No. We are doing the diet, and either you're going to help us or we're going to find someone else who can.'
McDougall: So you tried the diet.
April Runge: I met my daughter on day two of the diet. She was on all these medications still, but she was so full of chatter and animated. She sat [at the kitchen counter] on day two and grabbed my face and her eyebrows were going up and down, and she was telling me this intricate story. Something she couldn't have done before.
I'm like, 'You're in there. You're not quiet or crying, or a zombie.' You almost forget that's how life is supposed to be.
We knew right then and there this is how it's supposed to be. We were going to commit to this diet, it was our answer. Within six months she became seizure free.
The Runges keep a small square piece of paper taped to their cabinet. On it are a cocktail of medications Nevin had to swallow each day. One by one, the medications were crossed off as the diet kept working. Eventually each word had a line through it. The family keeps the paper as a reminder of where they were and what they endured.
McDougall: Can you explain the ketogenic diet?
April Runge: It is a high-fat diet. It's high fat, low carbohydrate, adequate protein.
Nevin: And no sugar.
April Runge: We viewed her food as medication. ... It's a very precise diet. ... You're changing the way the body works. Your body uses glucose for energy, and this changes it to ketones. It's like the Atkins diet on steroids.
The Runges had to weigh Nevin's food to exact grams, and she quite literally had to clean her plate. No morsel could be wasted, spilled or dropped.
McDougall: What would happen if Nevin deviated from the diet, even slightly?
April Runge: Seizures.
McDougall: Will Nevin have to be on the ketogenic diet for life?
April Runge: Well, Nevin, would you like to answer that question?
Nevin: Why yes I would. Actually. I'm off!
April Runge: She's been weaning the diet. ... then Aug. 3 of this year is when she came off. Sept. 14 ... she was released from epilepsy care. She doesn't need to see an epileptologist anymore. They don't think she's going to have any further problems.
McDougall: Nevin, do you remember the first thing you wanted to eat?
Nevin: An apple.
April Runge: A whole apple without having to weigh it.
April and Nevin recently spoke in front of about 300 people at the International Dietary Therapy Symposium hosted by The Charlie Foundation in Chicago. The Charlie Foundation is the leading organization promoting awareness and information regarding the ketogenic diet. Special guests of the night were Jeff Garlin and Meryl Streep, both of whom April and Nevin met, and they have pictures with the celebrities to prove it.
Nevin: He [Garlin] liked me. He says I'm cute.
The Runge lowdown
Who is she? Nevin Runge, 9, recently came off the ketogenic diet for seizures.
Family: Mom, April; Dad, Chris; and brother, Aiden, 8
School: Fourth-grader at South Elementary
Favorite subject: Science
Future occupation: An Olympic tumbler
Favorite song: "Gangnam Style"