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Ketogenic Diet Conference

Posted Jun 05 2009 5:07pm
Well, I just got back from the 1st International Symposium on the Dietary Treatment of Epilepsy and Other Neurological Disorders. The conference was held in Phoenix, AZ. I'll admit right off the top that this was the best conference that I've ever attended. The quality of science was stellar and, for a refreshing change, there was a tangible level of emotion that you don't normally get at science conferences.

The first morning of the conference we listened to a great intro talk on the History of the Ketogenic Diet (KD). This is a high fat, low carbohydrate diet used to treat drug-resistant seizures. The KD used to be one of the main treatments for epilepsy until the introduction of the anticonvulsant drugs in the late 1930s. In 1994 NBC Dateline ran a story on Charlie Abrahams, the son of the Hollywood movie producer Jim Abrahams, who became seizure free on the KD after many years of uncontrolled seizures. A few years later, Jim Abrahams directed a made-for-tv movie entitled "First Do No Harm", starring Meryl Streep. This, largely, led to the resurgence of interest in the KD.

At the conference both Charlie and Jim spoke about the impact that the KD had on their lives. Charlie is currently a straight-A student in school. At the end of the conference we heard a few very touching talks. One was given by a mother whose son developed seizures at a young age. They started with the anticonvulsant drugs, but the first few drugs didn't work. The mother told her neurologist that she had seen Jim Abrahams' NBC Dateline show on the KD and wondered whether they should try her son on the KD. Her neurologist gave a very common response, which was to state that the KD is very tough to adhere to/administer and that it was largely experimental etc. The neurologist suggested that they try more drugs. This conversation recurred a few times as they cycled through many anticonvulsant drugs. Eventually, the son had a catastrophic seizure which left him mentally handicapped. The mother finally convinced the neurologist to try the KD, and the son became seizure free within a few days and began showing some cognitive improvement. Naturally the mother was enraged that they were discouraged from trying a treatment that could have prevented the brain damage caused to her son. This story was a powerful reminder that parents really need to listen to their "guts" and aggressively pursue new treatments if the conventional ones aren't working.

Something to keep in mind is that the first drug has a 75% chance of completely controlling your seizures (on average, and depending on seizure type). The chance of the second drug working if the first one fails is significantly reduced. The chance of a third drug working when the first two didn't is almost 0%. At this point you are faced with a decision. You can continue trying more drugs, which are unlikely to work but simple to take - OR - you can try something that requires significantly more effort/energy but has a significant chance of reducing seizures. The KD's "specialty" is stopping seizures in patients that have failed the anticonvulsant drugs. Although the numbers vary from study to study, about 1/3 of patients will have a >90% reduction in their seizures on the KD, another 1/3 will have a >50% reduction of seizures on the KD and the final 1/3 will have a <50% reduction in seizures on the KD.

Although the KD does not work for everyone, this weekend's conference served as a sobering reminder that the diet is certainly worth trying if your seizures fail to respond to one or two anticonvulsant drugs. The potential benefits of the KD far outweigh the difficulties associated with the diet.

On the last day of the conference we were fed a ketogenic diet lunch (soy wrap with roast beef and lettuce, soy based dipping sauce with sesame oil, some mysterious white dipping sauce (mayo?) and a cabbage slaw). Nobody knew until we were told later in the day ...

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