Beth Zupec-Kania Talks About the First Ketogenic Dieticians’ Forum

Registered dieticians from the United States and Canada met at a conference on the ketogenic diet recently in Boston. This two-day meeting was organized and sponsored by Nutricia North America. According to Beth Zupec-Kania, RD, CD, with The Charlie Foundation, “The goal of the conference was to learn about current practices in diet therapies for difficult-to-control epilepsy. We asked for very detailed feedback and in late June we were able to tally the results to determine how to help dieticians facilitate this treatment for patients.”

Jim & Emma Two key speakers at the conference were Jim Abrahams, founder of The Charlie Foundation to Cure Pediatric Epilepsy and Emma Williams, founder of Matthew's Friends, a parent support group for the ketogenic diet in England.

Beth said, “Jim kicked off the meeting with some of the lessons he has learned through his son’s struggle with difficult-to-control epilepsy and the complete remission of seizures with the ketogenic diet. Emma Williams recounted the struggle that her son experienced with epilepsy and his success with the diet. Both parents have made a tremendous impact on bringing an awareness of this therapy to the public and to support health care professionals who are attempting to provide it.”

The Classic Ketogenic Diet

The ketogenic diet is a high-fat, low-carbohydrate diet used to manage seizures in children whose seizures are difficult to control with medications. It is prescribed by a physician and carefully monitored by a dietician.

The name ketogenic is derived from the word “ketone” -- ketones are formed when the body uses fat for its source of energy -- and the word “genic”, which means producing. Usually the body uses carbohydrates such as sugar, bread, and pasta for its fuel. But because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead, resulting in ketones, which can be detected in the urine, blood, and breath. The level of ketones can be manipulated by adjusting the diet. Stronger ketone levels are often more effective in controlling seizures

Studies of the classic ketogenic diet, which has been in existence since the 1920s, repeatedly show a decrease in seizures in 60 percent of patients, and a complete cessation of seizures in one in 15 patients. Although the classic ketogenic diet has been shown to be the most effective treatment available for difficult-to-treat epilepsy, newer, less restrictive versions of the diet were presented at the conference.

A study is in progress at Johns Hopkins Epilepsy Center to determine the benefit of starting the ketogenic diet early in the course of epilepsy. Infants who have been diagnosed with infantile spasms, a specific type of epileptic seizure syndrome seen in infancy and early childhood, are treated with the ketogenic diet soon after diagnosis. The treatment includes a six-month period of ketogenic formula, then a transition back to a normal diet. Early results of this practice have been encouraging.

The Modified Atkins Therapy

This is a more liberalized version of the classic diet, which has recently been reported by the Johns Hopkins team to be effective in a six-month study of 16 patients. Sixty-five percent of the patients achieved greater than 50 percent improvement in seizures in this study. This diet was recently written about by Eric Kossoff, MD, editor of a series called “Ketogenic Monthly News” for epilepsy.com. It has also been popularized by the press as an effective weight loss method.

The Low Glycemic Index Treatment

Designed at Massachusetts General Hospital, the Low Glycemic Index Treatment (LGIT) is an alternative medical nutrition therapy to the ketogenic diet. The LGIT monitors not only the total amount of carbohydrates consumed daily, but focuses on carbohydrates that have a low glycemic index. The glycemic index of a food refers to how high that food raises your blood glucose after ingestion compared to a reference food such as sugar. This diet is another liberal version of the classic ketogenic diet. Heidi H. Pfeifer, RD, LDN, a conference speaker, recently wrote about the treatment for epilepsy.com.

Both of these modified versions of the ketogenic diet were designed to make the diet more palatable and easier to follow, especially for older patients. However, studies are needed to determine the long term effectiveness of these newer diets.

The Medium Chain Triglyceride Diet

In existence since the 1970s, the Medium Chain Triglyceride (MCT) Diet is reported to be as effective as the classical version although it is less well known. This diet includes the use of a special fat derived from coconut oil called MCT oil. This oil is not tolerated by all patients and is often too expensive for families to use. Many dieticians use small amounts of the MCT oil or coconut oil to supplement the fat in the other versions of the ketogenic diet due to its known effects in stimulating ketosis and relieving constipation.

This diet will be featured on epilepsy.com in August and will be available through the Dietary Therapies section.

The common feature

Beth noted:All of the diet therapies discussed above share the common feature of carbohydrate restriction and the use of fat as the main source of calories. This shift in the dietary fuel supply forces the cells of the body to use energy very differently from the usual high carbohydrate intake of our American diets. Scientists have not been able to determine the reason why this change in energy use causes a reduction in seizures. The consensus from scientists, however, is that there is not just one, but likely several mechanisms that contribute to the diet’s efficacy.”

Conference highlight and dieticians dilemma

Dieticians from medical centers with experience in diet therapies for epilepsy were invited to share stories about their practices. According to Beth, “The conference highlighted the importance of nutrition management including special vitamins and minerals to prevent nutritional deficiencies and how to prevent constipation, the most common adverse effect of low carbohydrate diets.”

The role of the dietician as diet specialist and coordinator of this therapy was a common message from each presenter. The resurgence in interest in these therapies by patients and doctors has created new opportunities for dieticians; however this surge in demand of services has resulted in a dilemma.

In a follow-up survey of this meeting, dieticians reported that the barrier in providing these therapies was the shortage of time needed in order to give individual patients the attention that these diet therapies require.

In terms of treatments used, among 83 dieticians, 98% said they will use the Traditional Ketogenic Diet, 32% the MCT Oil Ketogenic Diet, 68% the Modified Atkins Diet and 44% the Low Glycemic Index Diet.

The issue of reimbursement

According to Beth, “Dietary treatment for epilepsy is not reimbursable by insurance companies. Therefore, hospital budgets do not allocate for these services as they do for diabetes, renal or cardiac diet treatments. The American Dietetic Association, which governs the practices of dieticians, has worked through years of federal legislation to achieve those insurance reimbursements. The dietary treatment for epilepsy will also require federal legislation for insurance reimbursement. Until this feat is accomplished, the ability of dieticians to provide these therapies will be limited. The good news is that guidelines are being designed by leading physicians and dieticians today which are a necessary prerequisite to government action.”

Web-based meal planner and Parents Guide

Beth noted thatDieticians rated the conference with high marks for the quality of speakers and the opportunity to network with other dieticians. Suggestions were provided by attendees for creating additional resources that will improve the ability to provide dietary therapies for epilepsy.” While it appears that many of these resources are now available, Beth added, “The Charlie Foundation and Nutricia North America are committed to assisting dieticians in providing dietary treatments for epilepsy.”

A free web-based computer program for dieticians supported by both organizations is available to create meals and recipes for the ketogenic diet. This high-tech program also allows dieticians to grant access to their patients which saves the dietician time and gives patients freedom in designing their diets. This unique program is being used world-wide.

The Charlie Foundation recently published a Parent’s Guide to the Ketogenic Diet in English and in Spanish and a manual for health care professionals. For more information or to purchase this guide, you may contact Beth directly through ketogenicseminars@wi.rr.com. The foundation has also provided 34 training programs in the past 3 years to health care professionals.

For more information on the Ketogenic Diet – please go to the Dietary Therapies Section on epilepsy.com.

Large group

Here is photo of all of the dietitians who attended The First Ketogenic Dietitians Conference (Click here for a larger version).
Beth Zupec-Kania can be seen at the far right, upper corner in the dark -- a silhouette looking to the right.

Edited by Steven C. Schachter, MD

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