Keto for Epilepsy
What is a Ketogenic Diet?
The Ketogenic Diet, also referred to as the Ketosis Diet, or Keto for short, is a way of eating that mimics the effects of fasting. For over 100 years, keto has been used to treat epilepsy. By consuming a diet rich in quality fats, adequate in protein, and low in net carbohydrates (total carbs minus fiber), the body’s metabolism begins to utilize fat as its main source of fuel, rather than carbs. This shift has profound effects on metabolism for both the sick and healthy alike. The diet shows promise for improving or reversing many neurological conditions and metabolic disorders. For healthy individuals, the diet represents a tool for preventing chronic disease, as well as optimizing cognition and body composition (i.e. fat loss).
What is ketosis?
The term ketosis refers to a byproduct of the breakdown of fat into useable energy, called ketone bodies, or ketones for short. This fat can be derived directly from diet (nutritional ketosis) or from fat stores of the body. Ketones are used directly by the body for energy. This breakdown of fat into useful energy is similar to the process that dietary carbohydrates undergo in producing glucose to fuel the body. In other words, ketones are to fat what glucose is to carbohydrates. Ketosis is defined as blood ketone levels greater than .5 millimolar/L.
- The word “ketogenic” means that the body is producing (genic) ketones (keto).
- Nutritional ketosis is not dangerous and should not be confused with diabetic keto acidosis.
- Ketones can be detected in blood, urine, and breath. Learn about checking for ketones here.
Does keto help epilepsy?
Ketogenic therapies and brain surgery are the only known cures for epilepsy. Half of the people with epilepsy who try keto have a seizure reduction of at least 50% and up to 25% become completely seizure free. If you or a loved one struggles with epilepsy, are not a surgical candidate, and have failed two epilepsy medications, a ketogenic therapy should be considered. This chart demonstrates that after a first anti-seizure drug fails, there is a 13% change the second one will control seizures and a 1% chance the third will stop epilepsy. These statistics remain unchanged for the past fifty years (source).
What types of epilepsy benefit from keto?
The ketogenic diet and the associated modified diets are an established treatment for the following syndromes and conditions:
- Angelman Syndrome (1) (2)
- Complex 1 mitochondrial disorders (3)
- Glucose Transporter Protein 1 (Glut-1) Deficiency Syndrome (4)
- Febrile Infection-Related Epilepsy Syndrome (FIRES) (5) (6)
- Formula-fed (solely) children or infants (7)
- Infantile Spasms (8)
- Myoclonic-Astatic Epilepsy (Doose syndrome) (9)
- Ohtahara Syndrome (10)
- Pyruvate Dehydrogenase Deficiency (PDHD) (11)
- Severe Myoclonic Epilepsy of Infancy (Dravet’s Syndrome) (12)
- Super-refractory status epilepticus (13) (14) (15)
- Tuberous Sclerosis Complex (16)(17)
- Adolescents and adults with epilepsy (18)
- Juvenile Myoclonic Epilepsy (19)
- Lafora Body Disease (20)
- Lennox Gastaut Syndrome (21)
- Rett Syndrome (22)
How does a keto diet work?
Because the ketogenic diet works when medicines fail, it appears that the diet’s mechanisms of action are different than those of anti-epileptic drugs. The metabolic theory suggests that the seizure control is realized through the restoration of the brain’s natural metabolic state through pathways including enhanced mitochondrial energy metabolism and increased availability of energy to the brain.
Researchers have also shown that the ketone bodies, beta hydroxybuterate and acetoacetate, might be the cause for the anti-seizure effects. One observation supporting this theory is the fact that seizure control can be lost by consuming carbohydrates, and, thus, falling out of ketosis. Another phenomenon supporting this claim is that blood or serum ketone levels have a strong, negative correlation with seizure activity.
What is the keto diet like?
A calorie level is determined by a dietitian for each patient based on their age and activity level. To achieve a desired level of ketosis, the diet is calculated in terms of ratios such as 4:1, 3:1, and 2:1. In a 4:1 ratio, there is 4 times as much fat as there is protein and carbohydrate combined. The dietitian devises meal plans that complete the required fat, protein and carbohydrate for each meal. Each meal plan indicates the exact gram weight of each food which must be weighed on a gram scale. A typical meal includes a small amount of fruit or vegetable, a protein rich food, and a source of fat such as heavy cream and butter or vegetable oil.
How do you begin the keto diet for epilepsy?
Ketogenic diets are started under close medical supervision. The diet is begun gradually and increased to the full amount over a 3 to 4 day period or longer. During this time blood sugar and ketone levels are monitored. A fasting period is not necessary to start the diet according to recent studies.
There are two methods to make the metabolic shift from using glucose to ketones as your main source of energy.
Diet (nutritional ketosis)– adopting a high fat, moderate protein, and low net-carb diet, will result in ketosis and will take 2-3 weeks to achieve a therapeutic level.
Fasting – complete cessation of caloric intake for a prolonged period of time has been used to treat disease as far back as 400 B.C. when Hippocrates, the father of modern medicine, employed the method for a myriad of ailments. Though this should be done while under medical supervision, fasting is a safe and effective way to get into ketosis quickly.
How soon does the keto diet reduce or eliminate seizures?
The diet can become effective immediately or can take several months. Each person is unique and has different seizure patterns and frequency. There is usually improvement within the first 10 weeks on the Ketogenic Diet.
Will anti-seizure medications be reduced after starting a keto diet?
If taking more than one anti-seizure medication, one may be reduced. The reduction of remaining seizure medication may be made if seizures improve over time. Some patients are able to have their medications completely discontinued. Medications may act stronger with the ketogenic diet therefore close medical monitoring is necessary.
What do you eat on a ketogenic diet?
A ketogenic diet should consist of whole foods that are organic, high in fiber, and sourced from one’s local environment. In order to maximize the therapeutic benefits of the diet, nutritional supplements, electrolytes, and hydration are also important to consider, and individuals who are suffering from digestive problems should seek additional medical support.
KetoDietCalculator ™ is a tool to assist clinical nutritionists in designing ketogenic diets. After a diet has been created by the nutritionist, he or she can grant access to their patients or clients. This tool was designed in 1995 by Beth Zupec-Kania and LifeTime Computing, Inc. It is a relational database that receives updates daily to its background tables of food, medicines and supplements. KetoDietCalculator is used worldwide. There is no fee to use the program for clinical nutritionists and their patients or clients. Please consider an annual donation to support maintenance of this program.
We have many recipes available on our website to help you get started!
Is keto healthy?
Most people do not develop high cholesterol levels while on the diet. Lipid levels are drawn prior to starting the diet and at regular intervals throughout the course of the diet. If a child develops high cholesterol or lipids, the diet can be modified such as including omega-3 fatty acids, probiotics, and fiber. Published studies (1) on long term outcomes do not support that ketogenic diets are unhealthy. When undertaken with the guidance of an experienced ketogenic therapy team, cholesterol is monitored regularly and tends to return to normal levels after initiating the diet.
By far the most common adverse effects of the diet are kidney stones and constipation. Both conditions are easily addressed prophylactically when working with an experienced an experienced ketogenic therapy team. In addition, all anti-seizure medications have adverse effects which can be significant (4).
How long do you have to stay on keto for epilepsy?
The diet is generally used for a period of up to 3 years if it is helpful in reducing or eliminating seizures. Some epilepsy conditions may require a ketogenic diet for longer. If the diet is not helpful, it will be stopped within a few months.
Is there proof that keto works for epilepsy?
Since 1995 there have been over 800 scientific and medical papers published detailing both mechanisms and efficacy of the Ketogenic Diet for epilepsy—including two randomized controlled studies (2) (3). In additional, clinical recommendations have been published for pediatric and adult epilepsies.
How do I find a doctor or dietitian?
If you think you can benefit from adopting a Ketogenic Diet, we encourage you to consult one of our dietitians, visit a participating hospital, or contact us so that we may guide you towards the best option given your specific needs.
The Charlie Foundation website features keto success stories dating back to 1945. Below are just a few of the featured stories, please visit our site to read more!
Charlie – the namesake for the Charlie Foundation