Keto for Epilepsy
Ketogenic Therapies and brain surgery are the only known cures for Epilepsy. Half of the people with epilepsy who try the diet have a seizure reduction of at least 50%. Up to 25% become completely seizure free. In the sections below, we explain how Ketogenic Therapies compare to anti-epileptic medications, how keto’s mechanisms are thought to affect the body, and stories from a few of the thousands of families who have had amazing results by implementing the Ketogenic Diet.
Clinical Guidelines for Ketogenic Therapies
Pediatric clinical guidelines have been published since 2009. In 2018, and international study group of ketogenic experts provided updated guidelines describing the safe and effective use of ketogenic therapies in clinical management for pediatric epilepsies. Adult specific guidelines were published in 2020. Please click the link to read the abstracts.
A high fat diet leads to a compromised cardiovascular system.
Published studies (1) on long term outcomes do not support this assertion. 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.
There is no science explaining why the diet is so effective.
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).
The Ketogenic Diet has other adverse effects.
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).
It is too difficult.
Today there is readily available professional dietary support for patients, and there are hundreds of new and delicious meal plans for people using a Ketogenic Diet. In addition, it has always been our position at The Charlie Foundation that the degree of difficulty decision should rest entirely with the patient or caregiver—not the health care professional.
It is our hope that armed with information you will look further into a dietary option for epilepsy treatment. It is our further hope that you will experience an outcome as wonderful as our inspiration, Charlie Abrahams, and the tens of thousands of people like him. Charlie’s seizures began in 1993. After multiple failed drugs, failed drug combinations, a failed brain surgery, and a prognosis of continued seizures and “progressive retardation,” he started the Ketogenic Diet in 1994. He was on the diet for five years. He has never taken another anti-epileptic medication and he eats whatever he wants. He is a happy pre-school teacher. He has never had another seizure.
Frequently Asked Questions
The Ketogenic Diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter, plus, nut and seed oils, provide the necessary fat. The diet also completely eliminates sweets such as candy, cookies, and desserts. Other carbohydrate rich foods such as bread, potatoes, rice, cereals, and pasta are not allowed on the strictest form of the diet, but are allowed on more liberal forms of the diet. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be most effective. The Classic diet consists of a ratio in grams of fat to non-fat (protein and carbohydrates) of 4:1 and 3:1. The modified Ketogenic Diet consists of ratios of 2:1 and 1:1.
People with seizures from infancy through the adult years may be helped by the diet. There is no way to predict beforehand whether it will be successful. Traditionally the diet has been used for children with myoclonic, atonic and tonic-clonic seizures. In every decade since the 1920’s, studies consistently show that 50-75% of infants through adults with difficult to control seizures of all types are helped by the diet. Creative recipes have helped to make the diet more palatable in the past few years.
Four major meta-analyses (reviews of many studies) have been published in the past 10 years and have determined that the Ketogenic Diet is effective in reducing seizure frequency in children with difficult-to-control epilepsy. A randomized, controlled study published in 2008 revealed that seizure frequency after 4 months was significantly lower in 54 children on the Ketogenic Diet than the control group of children who were on medication therapy.
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.
A calorie level is determined by a dietitian for each child 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.
If the child is on more than one anti-seizure medication, one may be reduced as the child starts the Ketogenic Diet. The reduction of remaining seizure medication may be made if the child’s seizures improve over time. Some children are able to have their medications completely discontinued. Medications may act stronger with the Ketogenic Diet therefore close medical monitoring is necessary.
The diet is 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.
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.
If a someone ate or drank something that was not part of his/her diet, they could experience a seizure within a short period of time.
The diet alone does not contain enough vitamins or minerals. A nutritional deficiency could develop without supplements. Special vitamin and mineral supplements are prescribed for each child while on the Ketogenic Diet. It is also important to drink adequate liquids while on the diet.
The diet is generally used for a period of up to 3 years if it is helpful in reducing or eliminating seizures. If the diet is not helpful, it will be stopped within a few months.
The most common adverse effect of the diet is constipation. There are dietary options to prevent this problem including eating high fiber vegetables that are allowed on the diet and drinking enough water. A less common adverse effect is kidney stones. This problem can be prevented by drinking adequate water. There are two anti-seizure medications which can cause acidosis and kidney stones which should be monitored very closely when used with the Ketogenic Diet (Zonegran® and Topamax®).
The Ketogenic Diet is calculated at a specific calorie level for children. The dietitian will keep track of your child’s growth to determine if a change in calories is needed to ensure normal growth.
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.
The Ketogenic Diet can be provided for people with feeding tube using pecial ketogenic formulas or blenderized whole foods. A dietitian will determine the type and amount of formula and supplements to accompany these.
There are blood tests that may be needed to determine if the diet is safe to implement. These include metabolic tests to rule-out fatty acid disorders or a carnitine deficiency.
Think you or a loved one might be a candidate for the Ketogenic Diet?
Types of Ketogenic Diets
There are a variety of diets that will allow you to get into ketosis. The major differentiating factor between them all is the amount of calories that come from protein, carbs and fat, which are what we call “macronutrients”, or nutrients in our food that have a caloric value. The three macronutrients differ in many ways, namely, their caloric values, as well as how the body uses them. Fat is the most calorically dense macronutrient, having 9 calories per gram, compared to 4 calories per gram for both carbs and protein. In a homeostatic state, the body utilizes fat and carbs for energy production, while it uses protein to rebuild the cells of our body. While this is generally the case, an overconsumption of protein can lead the body to break down the excess protein into glucose (which is what carbs break down into)
- Classic Ketogenic Diet
- Modified Ketogenic Diet
- MCT Oil Diet
- Modified Atkins
- Low Glycemic Index Diet (LGIT)
- Intermittent Fasting
Find a Provider
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.