Can You Eat Your Way To Seizure Control? The Ketogenic And Atkins Diet For Epilepsy

By Eric H. Kossoff, M.D.

Despite a doubling of anticonvulsants available for the treatment of epilepsy over the past decade, there has been a growing recognition that if two or three drugs don’t work, the odds of finding a successful medicine for seizures is nearly zero. Many children, adolescents, and adults look for another answer. For those that are fortunate, surgery can not only help but cure. However, there is a large group of people with epilepsy that medicines haven’t helped and surgery either is not an option or failed as well. When this happens, epilepsy experts consider other approaches, namely dietary therapies and vagus nerve stimulation (VNS). Both work in very different ways from drugs, and probably have a milder side effect profile. Many people wonder, with good reason, why these approaches are not used earlier in the course of epilepsy.

The ketogenic diet has been around for the past 80 years, perhaps even dating back to references in the Bible (Mark 9: 14-29) of Jesus curing patients with epilepsy by fasting. In the early part of the century, a water diet was used to mimic starvation. In 1921, the first true “ketogenic” diet was created at the Mayo Clinic by using a very high fat, low protein, extremely low carbohydrate diet. When medications such as Dilantin became popular in the 1940s and 1950s, the ketogenic diet fell out of popularity. Things changed in 1994, when a young child named Charlie was treated at our institution after failing many medications. His remarkable success prompted his father, Jim Abrahams, a Hollywood movie producer, to create the Charlie Foundation (www.charliefoundation.org), which has dramatically increased the use of the ketogenic diet in this country. The diet is also now available in nearly 80 countries worldwide and can be done for vegetarians, those with milk allergies, and those with religious food restrictions (e.g. kosher, Hindu).

Despite the widespread use of the ketogenic diet, how and why it works remains a mystery. We know that ketosis (measured in both blood and urine) is likely very important, but may not be the only reason why the diet works to suppress seizures. The diet consists of foods such as eggs, heavy whipping cream, meats, oils, mayonnaise, green vegetables, and fish. Foods are carefully weighed and measured; all medicines are checked carefully to make sure they contain no carbohydrates. At Johns Hopkins Hospital, we admit children in groups of 3 or 4 once a month for the diet. They are usually fasted 48 hours then an egg-nog liquid diet is slowly advanced over several days. Most of the admission is spent in classes learning how to use the diet at home.

Does it work? About half of children will have half of their seizures reduced; one quarter will have a 90% or better response. Only about 10% become seizure-free. Although most children remain on medications, several drugs can be either lowered or stopped completely in a large number of children. For children with feeding tubes or infants on formula-only, ketogenic diet is not only effective but easy to provide. The ketogenic diet is not all-natural, holistic, or free of side effects. Children can form kidney stones, have an increase in their cholesterol, become constipated, lose weight, and occasionally, they will experience slower than average growth. Our patients stay on the diet usually two years if it is helpful, although sometimes for much longer if necessary.

Other than side effects, does the ketogenic diet have any drawbacks? Definitely. For one, it is restrictive outside the house. Dinners at restaurants can be nearly impossible for families to plan. Second, it is hard (but not impossible) for teens and adults to stick to measured and weighed foods. Third, not every epilepsy center in the U.S. offers the ketogenic diet. Many of our families travel great distances to start the diet. Fourth, most centers, including ours, still fast children and admit them for a week, which requires their parents to take time off from work.

Enter the Atkins diet. Why would this be of any value? We know that the Atkins diet is similar in terms of foods, and seems to be able to make the liver form ketones just like the ketogenic diet. However, it is very different in other ways. Foods do not need to be weighed, calories are not restricted, and the protein percentage is much higher. No admission or fast is necessary, low-carbohydrate foods can be carefully used and are available many places, and interestingly, adults seem able to stick to it as well.

In 2002, we began treating some children and adults with a modified Atkins diet; restricting carbohydrates initially to 10 grams per day, providing a multivitamin and calcium, checking labs and weight regularly, and leaving medications constant. We reported our early success with six patients in the journal Neurology in December 2003. Now, a year and a half later, we have enrolled more than 20 children with epilepsy into a formal research study on the Atkins diet. This study was generously supported by the Atkins Foundation in New York City. Although no formal results are published yet, results have been very encouraging and side effects minimal.

Our second pediatric study has recently begun at Hopkins. We have enrolled children ages 3-18 with daily seizures that have failed 2 or more medications. Prior exposure to the ketogenic diet is allowed. The 6-month study will randomly choose 10 or 20 grams of carbohydrates per day for an individual child to help find out which is the ideal starting point. Although clinic visits at this time are not covered, we hope to secure outside funding soon to help pay for family expenses as we did for our first study.

We are also very excited about a current study looking at a modified Atkins diet for adults 18 and over with 2 or more seizures per week that have failed 2 drugs. This 6-month study covers all expenses (excluding travel to Baltimore) through a grant from the NIH. If you are interested in this study, or our next pediatric study, please contact our center at the address listed. Our website is http://www.neuro.jhmi.edu/Epilepsy/Peds.

Eric H. Kossoff, M.D.
Assistant Professor, Pediatrics and Neurology
Co-Director, Ketogenic Diet Program
The John M. Freeman Pediatric Epilepsy Center
at Johns Hopkins Hospital
Jefferson 128
600 North Wolfe Street
Baltimore, MD 21287-1000
Phone: (410) 614-6054
Email: ekossoff@jhmi.edu

The NYU Comprehensive Epilepsy Center also provides the ketogenic and Atkins diets for patients who are good candidates for dietary treatment. For more information, please call 212.263.8871.