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Excitement in Edinburgh: Report from the 2nd International Dietary Therapies Meeting

As I write this report, I am on a flight back from Edinburgh to Baltimore. The incredible changes that have taken place in the use of dietary therapies for epilepsy and other neurologic disorders in the 2 short years between this past week and our meeting in Phoenix Arizona in 2008 were clearly evident and in many ways, quite remarkable. Nearly 250 neurologists, scientists, and dietitians attended the 4 day “professionals” workshop held from October 5-8, 2010 at the Sheraton Edinburgh, followed by approximately 120 parents and caregivers at the “family” meeting held October 9 at the same location.

Perhaps the most notable difference was the experience and lectures were truly international, with the majority of speakers and attendees coming from outside the United States. As would be expected, the number of lectures from researchers in the United Kingdom was considerably higher than the US meeting. This was evident from the very first session, held the evening of October 5th, in which speakers from the United States, Europe, South Africa, India, Korea, Australia, and South America described the current state of dietary treatments in their regions of the world in rapid-fire manner with 10 minute talks. Although there were many differences in how to start and maintain the ketogenic diet, one thing was absolutely identical: all regions have an unmet need with patients who need the diet not receiving it due to limited dietitian, neurologist, and often financial shortcomings.

Another difference was the incredible variety in methods of providing the diet(s) that seemed to me more obvious than 2 years ago. I suspect some of this variability stems from aspects of the 2009 expert consensus guidelines in which several factors were deemed very flexible. For example, in most of the United Kingdom, children are started on the diet as an outpatient rather than in the hospital. In addition, almost it appears now that most centers worldwide no longer fast children at ketogenic diet initiation, several (including ours) do. One of the most debated topics (including an official debate between dietitians Zahava Turner RD and Gwyneth Magrath RD!) was the role of the “alternative” diets such as the modified Atkins diet and low glycemic index treatment in the course of treating children with epilepsy. Should they be used sooner (or first)? When should children be switched from one to the other? Can these diets be used in young children? These issues were discussed, at times in a vigorous manner, in Edinburgh.

Other hot topics at this meeting included the benefits of the diet for specific syndromes and situations, including Dravet syndrome, status epilepticus, infantile spasms, and GLUT-1 deficiency. In addition, there was discussion regarding the increasing use of diets in adults, improving hypercholesterolemia, benefits of calorie restriction (not just for epilepsy), and use in cancer. Basic science lectures primarily focused on effects of dietary treatments on mitochondrial function.

Unlike the Phoenix meeting, there were no separate lectures for basic and clinical scientists. Although this reduced the number of lectures at this meeting, combining all sessions allowed these different researchers to hear presentations perhaps outside their usual research topics, and thus gain insights for possible translational projects from each other. Many hallway conversations on how to take animal findings and bring them to children (and vice versa) occurred.

Approximately 50 cutting edge research projects from UK and US, but also Japan, India, Korea, Germany, China, and Australia were presented in a lively poster session held the evening of October 6th. This was a great venue for young, new researchers (as well as more experienced ones!) to get together informally and discuss the most recent information that has not been published yet.

Lastly, this meeting was unique as Matthew’s Friends charity, the primary sponsor and organizer of this conference, held a one-day parent/family symposium on Saturday October 9th. Approximately 10 of the professionals attending the 4-day conference remained an additional day in order to lecture both formally and provide consultations informally to parents of children either on or considering dietary therapy. Most families who attended were from Scotland, but several travelled to Edinburgh from as far away as Japan, the United States, and Israel. Several of these families have decided to band together and combine parent support group resources and create a “global family alliance”. Spurring this movement were Matthew’s Friends and the Charlie Foundation, but also groups from Japan, Israel, the Carson Harris Foundation and Canada will be involved in this worldwide initiative.

In summary, the WORLD of the ketogenic diet is changing rapidly, and these past 5 days demonstrated that in a way I have never previously seen. The 3rd International Dietary Therapy Meeting will be held 2 years from now in the United States (city to be determined), and we all hope the international flavor, cutting-edge research, and parent involvement will continue. Exciting times are certainly ahead of those of us in the field.

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