Active Low-Carber Forums - Treatment of Epilepsy “Keto Vs Goliath”

By Jim Abrahams (The Charlie Foundation.)

“Among my favorite medical euphemisms is the word “underutilized.” Underutilized, along with “last resort” are frequently used terms by medical professionals to describe the Ketogenic Diet as a treatment for epilepsy.
So what does underutilized mean in this context? It means that worldwide over thirty million people who could significantly benefit today (at least 50% seizure reduction with about 15% having their seizures go away completely) do not know about the diet or have access to support.
Thirty million people! That’s a lot of unnecessary suffering by people with epilepsy and their families.
So, what’s the holdup you may ask? Why nearly 100 years after its discovery, decades of consistently published successful outcomes, and an explosion of scientific understanding over the last 25 years are we still dealing with the word underutilized? I believe that there are forces at work in our healthcare system other than just good health. We call the mismatch Keto Vs Goliath.
For example:
Pharmaceutical and medical device industries that will make billions of dollars annually from epilepsy treatment.
A medical community that is virtually oblivious to nutrition and diet therapies. Quite simply these subjects are barely touched upon by medical schools.
A sugar industry that makes additional billions by adding sugar to pretty much all of our processed foods.
A cardiology community and an American Heart Association that have demonized fat based on flawed science for decades.
An insurance industry that makes it extraordinarily difficult to reimburse hospitals for trained Ketogenic Diet nutritionists.
Hospital systems which profit handsomely from surgeries, tests, devices and medications, but make no money from Ketogenic Diet Therapies.
Until recently even the professional epilepsy community has buried its head in the sand. For decades the Epilepsy Foundation of America, The American Academy of Neurology, The International League Against Epilepsy and the American Epilepsy Society had been virtually silent about the Ketogenic Diet in their literature and activities despite extensive evidence dating back to the 1920s that the diet is effective when administered under medical supervision.
While I was writing this, we received an email from a family whose child had improved dramatically on ketogenic diet therapy. The mother wrote;
“Dear Charlie Foundation, First, I want to thank you from the bottom of my heart for everything you’ve done to promote the ketogenic diet for epilepsy. To make a long story short, after being told my daughter has Lennox Gastaut, having up to 100 seizures a day, and trying 10 different pharmaceuticals with little to show for it, we started the keto diet on New Year’s Day this year (after having asked about it many times with a previous neurologist and being told it was too hard and “we weren’t there yet”). After less than a week on the diet, her seizures stopped. She has had less than a handful of breakthrough seizures (over the course of just two days) but has been seizure free for over a month now. Yesterday, we found out that her EEG from this Monday had normalized.”
Obviously, we are thrilled to learn that this child has benefitted, and we celebrate her recovery. Unfortunately, this little girl suffered through thousands of unnecessary seizures and countless drugs, ten to be exact, in order to finally access ketogenic diet therapy. Clearly the diet was used as a “last resort” in the case and in countless other cases that we hear about regularly. One could surmise that this is a form of medical neglect especially when the statistics on medication use in difficult to control epilepsy are well documented and bleak. If the first medication that is tried does not control seizures, the chance of a second medication being effective is less than 13% and if that one doesn’t work, the chance that a third medication helping is less than 1%. These statistics have been the same for decades. For this reason the International Ketogenic Diet Study Group included in their 2018 guidelines that a ketogenic diet is advised after the failure of 2 anti-seizure medications. *
The sad truth and moral of the story to me has always been that the medical destiny and the medical destiny of ourselves and our children is largely up to us.”