Living with Epilepsy
This diet has become increasingly popular....find out why
Drinking four glasses of heavy cream a day? “It sounded like the craziest thing I had ever heard of,” said Kathy Irwin when she first learned about the ketogenic diet—the high fat, extremely low-carb diet used as an alternative epilepsy treatment for children. But Irwin’s son Doel, then 4, was suffering. “We had been through about six medicines and nothing was working,” says Irwin. “Then we found out he was not a candidate for brain surgery. At that point, things were so bad he had 45 seizures in three days. Out of desperation, we tried the diet.”
Three days later, Doel “jumped up off the couch and enjoyed going outside again,” says Irwin. “He wasn’t completely seizure free, but we calculated a 95 percent improvement. It was amazing.”
In fact, Irwin was so amazed that she changed her entire life by returning to school to become a registered dietician. It took her seven years to get her degree, but late last year she helped establish the first ketogenic diet center in Knoxville, Tenn. “In the last two weeks, I’ve gotten five referrals. I had my first keto kid in February—he’s now seizure free,” she says. “That’s exciting.”
It seems the mainstream medical community is finally ready to believe, too. Although the diet has been around since the early 1920s, many physicians brushed it off as an ineffective alternative therapy, until recently. Last year in London a large randomized study of the diet proved that the diet was highly effective in reducing seizures in children who did not respond well to medication. Of course, physicians at the John M. Freeman Pediatric Epilepsy Center at Johns Hopkins—the first and largest ketogenic diet center in the country—already knew that. And while they admit that studies like these help garner attention, Dr. Eric Kossoff, co-director of the center, believes the tide has already turned. “It’s hard to find a large city in the U.S. which doesn’t offer the diet,” he says. “That’s not how it was 10 years ago.”
Now, says Kossoff, the focus has turned to how best to tweak the diet—both so it works better and also to make the notoriously difficult regimen more tolerable. “It’s one of the hottest topics out there for those of us who use the diet,” he says.
Traditionally, a child would be hospitalized for a week and would be on a strict fast for one to two days before starting the diet, which consists of 90 percent fats, a moderate amount of protein and very few carbohydrates. All food must be measured to obtain the perfect mix, and even a small infraction—a few peanuts or a cracker— might cause seizures to return. The diet throws the body into ketosis, which means it is burning fat instead of sugar for energy, but researchers still don’t know exactly why or if ketosis is why the diet works as an anticonvulsant.
According to Kossoff, about 50 to 60 percent of children treated with the diet will have a 50–60 percent reduction in seizures. About half of those will go on to have a 90 percent reduction. Now researchers are scrambling to find indicators of what makes the diet work. “In the last 2 years there has been very strong evidence for several conditions—including infantile spasms and myoclonic epilepsy—doing very well on diets. If a child comes into the office with one of those conditions we may not even try drugs and go straight to the diet first. That’s where we are headed as a field.”
One of the most recent changes to the diet is that many centers don’t use the fast at all now. At Johns Hopkins, they have reduced the fasting period from 48 hours to one day. Other centers are also routinely using lower fat ratios and many are not restricting calories or fluids as much. The average length of time on the diet has also changed. While 2 years used to be standard, “We’ve had children on the diet for 5 or 10 years,” says Kossoff. “One was even on it for 25 years.” However, the diet may also be stopped after a few months nowadays if it is not working.
So what kind of side effects are these long-term patients seeing? “Relatively few,” says Kossoff. “Growth gets impacted the longer you are on the diet. One patient who has been on the diet for over 25 years is short, and we do see a higher risk of kidney stones and bone fractures after many years of diet use. But cholesterol doesn’t seem to be a problem, which is a surprise. However, if you are only on the diet for several years, most of these problems are minimal.”
Jane Finnigan of Mobile, Ala., was willing to risk these side effects when she put her 8-year-old son, Tim, on the diet 12 years ago. Diagnosed with epilepsy in kindergarten, Tim was eventually “on so much medication that he couldn’t function in school at all,” she says.
Finnigan finally stumbled upon the diet in her own research and, although her neurologist told her she was wasting her time, she decided to pursue it. “I was scared to death, but Day One, Tim was seizure free.”
Tim stayed on the diet for two years and was off all medications within 12 months. “Tim was just a totally different child,” says Finnigan. “He became a straight-A student.”
“The diet is not easy. It’s a matter of coming up with things that will taste good to a child. Some parents don’t even try,” she says. “All one little girl ate was eggs and lettuce— no wonder she didn’t stay on it. But Tim had the willpower of an adult. He wouldn’t cheat.” Jane even got the head of the cafeteria at Tim’s public school on board. “They made sure he had his own dishes and bought all of his food separately.”
While Tim did end up in the hospital several times with kidney infections, Jane says “it was scary, but still worth it.” After going off the diet, Tim was told to avoid chocolate and alcohol at all costs. Now a junior at the University of Southern Mississippi, Tim—who has remained seizure free—is happy acting as his fraternity’s designated driver. “He tells me, ‘I’ve learned to have a good time without alcohol.’”
Alternatives to the ketogenic diet—including the modified Atkins, the MCT, and Low Glycemic Index Treatment—are also gaining in popularity. “They’re all basically low carbohydrate ketogenic diets, but they’re often less restrictive. We’re using them a lot more in adults and teens,” says Kossoff. “In fact, I rarely offer the conventional [or classic] ketogenic diet to children over 12 years old now,” he says, noting that results are similar and it is incredibly difficult to get someone that age to change eating habits.
Kossoff estimates that in any given year, there are 600– 1,000 children in the United States actively on the ketogenic diet, and another 200 on the modified Atkins.
Kristina Foster, 17, was very nervous about going on the Modified Atkins Diet because “I was a carbo-holic. I’d eat cereal or pastries in the morning, a sandwich for lunch and a baked potato for dinner.” The Virginia Beach teen had been suffering with epileptic seizures for years but it wasn’t until she started having tonic-clonic seizures at age 16 (she missed her Sweet 16 party because she fell and knocked out her two front teeth) that the family felt compelled to find a better solution. Drugs weren’t the answer—she suffered horrible side effects including severe nausea and violent outbursts.
But Kristina felt better within days of starting the diet, which differs from the traditional ketogenic diet because, although carbs are counted, proteins, calories, and fluids are not restricted. “I started enjoying reading again, which had been a real struggle,” she says. “Now, in the morning I have pancakes that are made out of ricotta cheese and whey butter with sugar-free syrup,” says Kristina. “For lunch, I’ll have a quesadilla on a low-carb wrap. For supper we have a grilled meat and broccoli with cheese sauce. Most of the time I do pretty well, but I struggle at the holidays when I have to have mashed cauliflower instead of mashed potatoes.”
Kristina now leads a support group for other local teens with epilepsy, but one of the family’s most valuable resources has been the Internet. “My mom has gotten recipes and support from this Yahoo group she is part of,” she says.
Kossoff led a 2008 study that indicated that the Modified Atkins Diet can cut seizures in adults with epilepsy, too. “There is currently a lot of research on how all these diets will work on other conditions, like Alzheimer’s disease, brain tumors, autism and even migraines.” As for those pediatric neurologists who still don’t use the ketogenic diet? “There are very few of them at this point,” says Kossoff. “Most physicians believe in it and refer them to centers that offer it. Many unfortunately do not have dietitians locally, so they do have to refer.”
For more information about the ketogenic diet, visit the Johns Hopkins Epilepsy Center Web site at www.neuro.jhmi.edu/epilepsy/info.html. The Charlie Foundation to Help Cure Pediatric Epilepsy also offers many seminars and an introductory video about the ketogenic diet. Contact them at 310-393-2347 or at www.charliefoundation.org. The Epilepsy Foundation eCommunities has a Recipes and Resources group where people share favorite recipes, tips and information. The group, which allows people to share recipes and information on various diets, can be found at epilepsyfoundation.ning.com/group/
recipesresources, which is open to members of the Foundation’s eCommunities. Join eCommunities today for access to a wide variety of resources, information and personal contacts! Editor’s note: The ketogenic diet is not a do-it-yourself diet. It is a serious form of treatment that, like other therapies for epilepsy, should only be used in conjunction with a health care professional.