[Ketogenic] From 500 seizures a day to seizure free, med free


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"Nevin Runge was 10 months old when she had her first seizure. At 2 1/2 she had such a severe seizure that she was transported by helicopter to a local children's hospital. What followed was a cycle of drugs that often caused more harm than good, remembers her mom, April Runge, of Crystal Lake.

Nevin endured side effects that dulled her emotions or made her nerve endings scream with pain-so much so that she couldn't even bear a hug from her parents.

"We tried another drug that gave her a rash, another gave her tremors and she couldn't even hold a spoon to feed herself," April says. "We were pouring 12 medications down her throat a day."

When an EEG showed Nevin was having up to 500 seizures a day, despite all the medication, her parents decided it was time to try the Ketogenic Diet, a high-fat diet for children with epilepsy created in the 1920s that had fallen out of favor as new epilepsy drugs hit the market. But with drugs failing to be the hoped for cure-all, some doctors have begun using the diet for children with epilepsy again, often with amazing results.

After several years on the Ketogenic Diet, she was completely weaned from the diet on Aug. 3, 2012, and remains seizure-free, without any medication. She has been mainstreamed into a regular classroom at school and recently spoke at a fundraiser and international symposium for the Charlie Foundation.

"They don't think she'll ever have problems with seizures again," April says. "It's a gift."

Robyn Blackford, a ketogenic dietician at Lurie, admits many parents come to her skeptical about putting their child on a diet consisting of 90 percent fat, especially since no one can say exactly how or why the diet works.

"When I first saw the diet, it seemed to be against good, healthy child nutrition rules, but after I saw the first child become seizure-free, my mind was completely changed," Blackford says. "I've seen so many children helped by this diet."