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.
Interview with Dr. Douglas Nordil
Q&A with Dr. Douglas Nordli, director of pediatric
epilepsy at Lurie Children’s Hospital in Chicago
Q Is there an age limit to start the
A No, we’ve treated patients as early as six
Q How long does it take to see
A In some dramatic circumstances, it’s a
light-switch. But typically it takes about two months.
Q Is this something to try when
nothing else has worked?
A In the past, it was considered a treatment
of last resort, but given how successful it can be in certain
circumstances, people are asking, are there times you want to
consider it right off the bat? With very specific types of
epilepsy, this can be the first choice.
Q Why is the diet mainly used with
A Children have a better ability to use the
ketones in their body and get them to the brain. But at a recent
conference, people were talking about its use in Parkinson’s, brain
tumors and expanding to the adult population.
Q Is it harmful to children to be on
a high-fat diet?
A We think epilepsy can harm the child, not
just from the seizures, but when they’re suffering it seems to take
a toll on development, cognition.So when we look at thatºthis
doesn’t lower the brain energy, it actually raises the brain
Q Is it a difficult diet for parents
A There is measuring and mixing, but then it
becomes second nature.
And there are nice computer programs that make it much
more palatable and a lot more flexible.
Q Can parents put their child on the
A We recommend the diet is done under a
ketogenic dietician. It can have side effects and you need vitamins
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.
The Runges began working with a ketogenic dietician to create a customized diet for Nevin, with 90 percent of Nevin’s food consisting of fat. Each morsel Nevin ate was carefully planned and measured to create the correct balance. The results were immediate.
“On the second day, I met my daughter for the first time in 10 months,” April says. “She was so happy and so animated. So full of life.”
And doctors like Douglas Nordli, director of pediatric epilepsy at Lurie Children’s Hospital in Chicago, also have seen dramatic results in some of the children on the Ketogenic Diet.
“Each time a new medication comes up, people are hopeful that maybe this is the answer. It’s so much easier to take a pill,” Nordli says. “But we realize medications may help some people, but there are some that are poorly controlled. If you’ve tried a reasonable amount of medications, why not try something completely different that can be done without any pills and can control your seizures?”
Research has shown that about one-third of children on the Ketogenic Diet become seizure-free, Nordli says, and another one-third see a reduction in their seizures. Some children, after several years on the diet, are able to wean off both medication and the diet and go on to live a seizure-free life.
In the 1990s, Jim Abrahams spent years taking his son Charlie to doctor after doctor around the country to search for a cure for Charlie’s epilepsy. When every available medication, and even brain surgery, failed to quell the seizures, Jim decided they had nothing to lose by trying the Ketogenic Diet.
“There was only one hospital in the world back then, Johns Hopkins, who had this diet, so we took him there and put him on this diet,” Abrahams says. “He went from having dozens of seizures a day to nothing within two days. It was a miracle.”
Charlie’s 20 now, in college and completely off both the diet and epilepsy drugs.
But Abrahams, who with his wife Nancy founded the Charlie Foundation to Help Cure Epilepsy in 1994, says most people still don’t know about the diet and many doctors are woefully unaware of the diet’s possibilities.
“It’s underutilized. There is a world epilepsy population in excess of 50 million people and most started having seizures as children,” says Abrahams, whose foundation is dedicated to educating people about the Ketogenic Diet.
“Most kids and adults who try the diet see an improvement in their seizures, but only a small, tiny fraction-1 percent-even hear about the diet or get good information about it. We have a long way to go.”
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.”
Blackford says researchers believe the diet’s success has to do with the ketones, which result when body fat is broken down for energy. “When you burn fat for energy, instead of using glucose, your body has a buildup of ketones in the blood,” she says. “We think that is what’s anti-convulsant.”
The diet can be started with infants through a liquid formula, and the Charlie Foundation recently awarded a grant to Rush University Medical Center in Chicago to set up a Ketogenic Diet program that will serve children and adults.
“We want people to know there is a viable alternative to drugs and surgery that works for most people who try it and that has been scientifically proven in controlled studies,” Abrahams says. “And the larger message is, for all of us, that it’s important to become involved in our own medical destinies and that of our children. To think otherwise can be harmful.”
As for Nevin? 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.”