Epilepsy
Ketogenic Diet
In 1993, Jim Abrahams was desperately trying to find a treatment for his son Charlie, who suffered from severe epilepsy that did not respond well to drugs. The father stumbled across the ketogenic diet, which resulted in seizure freedom for his son. However, Jim was shocked that multiple specialists did not tell him about the ketogenic diet. Some doctors even discouraged him from trying it for his son. Outraged at the situation, Jim used his talents and connections as a Hollywood producer/writer/director to make the TV movie First Do No Harm starring Meryl Streep. He was also profiled in a 1994 Dateline segment on the ketogenic diet. You can view the Dateline segment on The Charlie Foundation’s Youtube channel.
Jim Abrahams switched career paths to start The Charlie Foundation, a non-profit dedicated to raising awareness about the ketogenic diet and helping patients implement it. The Charlie Foundation and Jim Abrahams’ work was instrumental in the explosion of papers on the ketogenic diet following its creation in 1994.
So why was the ketogenic diet unpopular prior to 1994? In the 1994 Dateline segment (10:47 into the video), Dr. Donald Shields explains that the ketogenic diet lost popularity since the 1920s because there wasn’t a pharmaceutical company selling it to doctors. The history of the ketogenic diet shows that medical treatment isn’t always driven by science.
The ketogenic diet as a treatment option
A 2014 review of the literature summarizes the pros and cons of the diet well:
In summary, KD [ketogenic diet] and MAD [modified Atkins diet] treatment show modest efficacy, although in some patients the effect is remarkable. The diets are well tolerated, but often discontinued because of their restrictiveness. In patients willing to try dietary treatment, the effect is seen quickly, giving patients the option whether to continue the treatment.
Some points of interest about the diet:
It works in adults. The 2014 review mentioned earlier summarizes the research on adults. However, it is likely that adherence is lower in adults than children and infants.
Is it difficult to adhere to? This varies from person to person. Some people love the ketogenic diet because they experience seizure freedom without the side effects of drugs, are no longer obese, feel improved mental clarity (no “brain fog”), and/or see other unexpected health benefits. Others find the initial adaptation period to be brutal, dislike how socially restrictive the diet is, and/or find the diet difficult to stick to. Perhaps the best way to find out is to simply try the diet.
The medical version of the ketogenic diet differs from the popular version that people use to lose weight. Some notable differences include:
- Specific macronutrient ratios. The idea is to ensure a high level of ketosis to mimic what happens during fasting.
- Careful weighing and measuring of food to ensure that the macronutrient ratios are met. This is time-consuming and less convenient.
- Calorie restriction / a calorie target.
- Water restriction. (Wheless argues against this practice.)
- The “classical” version of the ketogenic diet begins with fasting in a hospital. (The classical ketogenic diet typically differs from the diet used in the 1920s due to the use of modern foods such as vegetable/plant oils rather than animal fats.)
It is unclear if these differences lead to a medical benefit (or harm). Similar diets used to treat epilepsy do away with many of these restrictions to make the diet easier to follow. The second most studied diet, the Modified Atkins Diet, is shown in some studies to have similar success rates and is shown in other studies to have somewhat lower success rates. The Charlie Foundation website has a good summary of the differences between the various diets used to treat epilepsy.
There are side effects. While one can argue that the ketogenic diet has fewer side effects than many AEDs, it does sometimes lead to side effects. One serious side effect is kidney stones (renal calculi) in 3-7% of children on the diet. This number could be lower via supplementation with citrate / Polycitra K where risk of kidney stones is high. Growth in children may be lower, although there is conflicting data.
The diet can lead to cholesterol levels that are considered unhealthy, although this is controversial because the scientific evidence suggests that cholesterol levels are extremely unreliable in predicting death from cardiovascular disease. For example, the Minnesota Coronary Experiment found that lowering of cholesterol was associated with higher rather than lower mortality.
For a discussion of other side effects, see:
[2001] The Ketogenic Diet: An Effective Medical Therapy With Side Effects
[2004] Early‐ and Late‐onset Complications of the Ketogenic Diet for Intractable Epilepsy – This Korean paper reports side effects in children.
[2009] Optimal clinical management of children receiving the ketogenic diet: Recommendations of the International Ketogenic Diet Study Group – Skip ahead to the section on Adverse effects of the KD. It discusses the conflicting data on the effect of the KD on growth in children.
The diet is the treatment of choice for specific conditions. Table 1 of this 2009 review paper lists epilepsy syndromes and other conditions where it is particularly beneficial:
- Glucose transporter protein 1 (GLUT‐1) deficiency
- Pyruvate dehydrogenase deficiency (PDHD)
- Myoclonic‐astatic epilepsy (Doose syndrome)
- Tuberous sclerosis complex
- Rett syndrome
- Severe myoclonic epilepsy of infancy (Dravet syndrome)
- Infantile spasms
- Children receiving only formula (infants or enterally fed patients)
- Selected mitochondrial disorders
- Glycogenosis type V
- Landau‐Kleffner syndrome
- Lafora body disease
- Subacute sclerosing panencephalitis (SSPE)
For more information on how to implement a ketogenic diet (e.g. to find a dietitian who understands the diet), The Charlie Foundation’s website has a wealth of information.
Oligoantigenic diet and food intolerances
Egger at al. used an elimination diet on patients and instructed them to slowly re-introduce foods to identify their specific food intolerances. For children with epilepsy as well as migraines or hyperkinetic behavior (ADHD), 25 out of 45 (56%) became seizure free while another 11 out of the 45 (24%) had fewer seizures. Their results and diets on the diet were published in the following paper:
Egger, J., Carter, C. M., Soothill, J. F., & Wilson, J. (1989). Oligoantigenic diet treatment of children with epilepsy and migraine. The Journal of Pediatrics, 114(1), 51–58. doi:10.1016/s0022-3476(89)80600-6
The full paper is available here.
Unfortunately, Egger’s work (while recognized among migraine researchers and cited frequently by them) has been more or less ignored by epilepsy researchers.
Some additional notes:
- The elimination diet did not work in children without migraines or hyperkinetic behavior. None of the 18 such patients who tried the diet improved. Another clinician also reported ineffectiveness in such patients (see “Restricted diets for treatment of migraine“).
- The elimination diet was not a ketogenic diet and succeeded in children who previously failed a ketogenic diet. This suggests that this diet has a quite different mechanism of action than the ketogenic diet.
- Skin prick tests and IgE antibody tests are not reliable methods of detecting these food intolerances.
Paleolithic Ketogenic Diet
The paleolithic ketogenic (PKD) diet is even more of a pariah in the research community than the oligoantigenic diet as it is basically an all-meat / carnivore diet. The PKD diet consists of meat, animal fat, fish, offal (e.g. liver and brain), and eggs. While the diet may seem extreme by Western standards, the Inuit (Eskimo) have consumed all-meat diets for generations and enjoyed excellent health before they began to adopt Western ways of eating. Arctic explorers of non-Inuit descent have also eaten all-meat diets without health problems (see Vilhjalmur Stefansson’s series of articles in Harpers magazine).
The diet shuns foods with a poor track record (or no track record) when it comes to human health. For example, it is known that gluten is a rare cause of epilepsy as well as a wide range of other conditions. One difference between the paleo ketogenic diet and the classical ketogenic diet is that the paleo ketogenic diet explicitly excludes gluten.
Regardless of the diet’s pariah status, it may be of interest in treating epilepsy. The following case studies have been published:
- Clemens, Zsófia, et al. “Childhood absence epilepsy successfully treated with the paleolithic ketogenic diet.” Neurology and therapy 2.1-2 (2013): 71-76.
- Clemens, Zsófia, Anna Kelemen, and Csaba Tóth. “NREM-sleep associated epileptiform discharges disappeared following a shift toward the paleolithic ketogenic diet in a child with extensive cortical malformation.” Am J Med Case Rep 3.7 (2015): 212-5.
The PKD diet was developed by Zsofia Clemens and Csaba Toth, the brains behind a clinic in Hungary called Paleomedicina.
Potential advantages of the diet are:
- Better efficacy than the classical ketogenic diet. Zsofia Clemens states in 14:55 of this interview that all but 1 patient became seizure free on the diet, although not all patients adhere to the diet fully. The efficacy is much better than the ketogenic diet, which results in seizure freedom for roughly a tenth of patients. For information on the efficacy of the ketogenic diet, refer to the Efficacy Demonstrated section in this paper by Eric Kossoff and his colleagues on page 537: “In general, 10%–15% of children who initiated the diet were seizure free 1 year later, 30% had a 90% reduction in seizures, and 40% to 50% found that the diet was either too difficult to continue or insufficiently effective and therefore discontinued it during the first 6 months.”
- Meat-only diets happen to reverse a wide range of autoimmune diseases as long as the diet is maintained. One theory is that intestinal permeability is the mechanism behind this phenomenon. There is currently little or no information on whether the PKD diet affects epilepsy with an autoimmune origin.
- Fewer side effects than the classical ketogenic diet, which has sometimes been reported to result in slower growth in children. The earlier 2013 case study noted that the 7-year-old child’s weight and height did not change in the 2 years prior to the PKD diet. After the diet, she gained 3 kg (19 to 22kg), and grown 6 cm (110 to 116cm) in 4 months. She gained seizure freedom in 6 weeks after starting the diet. Paleomedicina’s clinical experience has been that there are no lasting side effects of the diet when used to treat patients with and without epilepsy. Initial side effects of the diet include diarrhea, low energy, and headaches; these side effects are temporary and go away. Refer to 56:38 of this interview with Zsófia Clemens.
See this primer on all-meat diets for more details on the PKD diet.
Resources
- Reddit r/keto - Search this Reddit community for “epilepsy” or “seizures” to find posts about the ketogenic diet’s effect on epilepsy.
- Reddit r/epilepsy - Search this Reddit community for “ketogenic” or “keto” to find relevant posts.
- The main JustMeat.co webpage has many links to various carnivore communities on Reddit and Facebook.
- Epilepsy and unfashionable science - This blog post discusses the various known causes of epilepsy, some of which are not typically screened for prior to treatment.