Steve, our daughter Joanna, and I travelled to Edinburgh, Scotland in early October 2010 to attend the 2nd symposium on ketones called “Dietary Interventions for Epilepsy and Other Neurologic Diseases,” where I presented two abstracts on posters. One was Steve’s case study and the other was caregiver reports of responses of persons with dementia to medium chain fatty acids. I hope to get the chart up on the website very soon. Dr. Veech’s work and/or his ketone ester were discussed in several of the presentations. About 150 people attended, mostly pediatric neurologists, PhD researchers, and dieticians, who are interested in and involved in ketogenic diet and other ketone research. Several of the presenters were from John Hopkins University, where the ketogenic diet has been used for many decades for childhood epilepsy. This diet is used primarily in children who do not respond to anti-convulsant medication, but recently has been used in adults as well. We met a man named Mike from England who had resistant epilepsy who became seizure free on this diet and has remained so for about three years ago. The diet has even been tried as a first line (before medication) at John Hopkins with success in some infants with infantile spasms. About 18-20% of children with drug resistant epilepsy become seizure free and another 35-40% have a reduction in their seizures by at least 50%. They do not know exactly why it works and also why it works in some people and not in others. This is the same thing that we see in our friends with Alzheimer's that some respond to the ketones from coconut oil and/or MCT oil and some do not.
The strictest form of the diet calls for about 75-80% of the total calories to be consumed as fat and the rest as a combination of carbohydrate and protein. The protein is calculated to allow the child to grow, or the adult to maintain lean body mass. Some of the presenters have done research showing that less strict forms of the diet may work for some people. There is an MCT oil modification of the diet, using 60% of the calories as MCT oil, a modified Atkins diet, and the Low Glycemic Index Diet. Any of these diets could be tried with the help of a dietician in someone with Alzheimer’s, Parkinson’s, ALS, traumatic brain injury and potentially some other neurologic diseases. There are some small studies and case studies suggesting that this could be beneficial. One study showed that following stroke, the ketogenic diet can help preserve brain volume.
Another section of the conference focused on cancer and the ketogenic diet with caloric restriction (20-40% less than maintenance calories). Dr. Tom Seyfried presented his research showing that glioblastomas shrink by as much as 80% in response to this type of diet. He believes that at least 80% of cancerous tumors would shrink with this approach, since most cancers can use only glucose as fuel and cannot use ketones. On this type of diet as the blood sugar becomes low, the blood supply and energy to the tumor dwindles as well as the tumor(s), even in the case of metastatic tumors. He has some human case studies as well as plenty of animal studies to support this.
The organizers for this conference were www.matthewsfriends.org and for the previous conference in 2008 www.charliefoundation.org. Both of these organizations were founded by parents of children with epilepsy who responded to the ketogenic diet, and either of these can provide information and dietician help with these diets. The next conference will be in 2012 and they are seriously considering including a section on Alzheimer’s disease.
We had a wonderful time in Edinburgh, although the travelling back and forth is not much fun. Steve did amazingly well, although there was some confusion when we were out after dark. The hardest part was trying to figure out the best times to give him his oil since we were five hours ahead there. It is always good to get back home - much less confusion there!
Labels: alzheimer's disease, alzheimers, cancer and ketogenic diet, epilepsy, infantile spasms, ketogenic diet, Low Glycemic index diet, modified Atkins diet, stroke, traumatic brain injury