The ketogenic diet for epilepsy (KDE) is a special diet that has helped many children and some adults achieve better (or even full) control of their seizures. It’s a first-line treatment for a few specific epilepsy syndromes, such as epilepsy due to mutations in GLUT-1 or pyruvate dehydrogenase deficiency.1
The ketogenic diet for epilepsy was developed in the 1920s by a Michigan doctor named Hugh Conklin. However, once effective medications were developed, the diet was used less and less frequently.2
It has regained recognition and has become a standard backup plan for children whose epilepsy symptoms are difficult to control with medication.1 With more than 470,000 children living with seizure disorders in the United States (according to Centers for Disease Control and Prevention statistics), it’s an important addition to the arsenal of treatments for epilepsy.
Researchers are also beginning to see how it might help adults with epilepsy and people with a variety of neurologic disorders.
The Ketogenic Diet and Epilepsy
What It Entails
The ketogenic diet for epilepsy is a very high-fat diet with just enough protein for body maintenance and growth, and very low amounts of carbohydrate.
When fats are broken down for energy, the body goes into what’s called a ketogenic state, in which the body generates molecules called ketones. The goal of the KDE is for the brain to use ketones for energy rather than glucose (sugar) as much as possible.
Ketones are (largely) water-soluble, so they are easily transported to the brain. The brain cannot use fatty acids for energy, but it can use ketones for a large portion of its energy requirements.1
The KDE is usually begun in a hospital setting and often begins with a one- to two-day fasting period, though there may be a trend away from both of these requirements.3
After determining the proper amount of protein (depending on age, etc.), the diet is structured as a ratio of fat grams to protein grams, plus carb grams. It usually begins with a 4 to 1 ratio and can be fine-tuned from there. The diet is often calorie and fluid-limited.4 Additionally, no packaged low-carb foods (shakes, bars, etc.) are allowed for at least the first month.
Because a gram of fat has more than twice the calories of a gram of protein or carbohydrate, this equation means that at least 75% of the calories in the diet come from fat. This is a very strict diet, and it takes time to learn how to put together meals that fit the formula. All food must be weighed and recorded.
Weaning off the diet is often attempted after two years, though some children are kept on it for longer.1
Why It Works
Researchers are beginning to understand why the ketogenic diet works to lower seizure frequency. According to a 2017 review of studies, it appears that several mechanisms may be at work, including the following.
- The diet appears to alter ketone metabolism in the brain in a way that enhances the brain’s ability to produce the neurotransmitter GABA, which has a calming effect on the brain.1
- The diet has significant anti-inflammatory and anti-oxidative impacts, which appear to alter the way some genes involved in epilepsy are expressed.
- Certain fatty acids featured in the diet have anticonvulsant effects and have even been shown to boost the effects of valproic acid—a common anti-seizure medication.
- Polyunsaturated fatty acids in the diet may prevent brain cells from becoming overexcited.
- Decanoic acid, which is part of the diet as well, appears to have a direct inhibitory reaction on the AMPA receptors in the brain. These receptors are believed to play a role in epilepsy and are the target of some epilepsy medications.
- Effects on a key sensor of cellular energy appear to help prevent excessive firing of brain cells.
- The diet may impact circadian activities and the expression of a growth factor in the brain in a beneficial way.5
Studies generally show that about a third of children with epilepsy who follow the ketogenic diet will have at least a 90% reduction in seizures, and another third will experience a reduction of between 50% and 90%.46
This is remarkable, considering that these patients are generally those whose seizures are not well-controlled with medications.
A growing number of studies have been done on the KDE and modified Atkins Diet in adults with seizure disorders, and the results are similar to studies with children.
One 2014 study reported that 45% of adolescent and adult participants saw a reduction of seizure frequency of 50% or greater. Tolerability appeared better in those with symptomatic generalized epilepsy.
Interestingly, it was more difficult to keep adults on the diet, since they obviously have more control over what they eat. Research is still limited in this area and more trials are needed.7
A 2017 report on use of these diets during pregnancy suggests they may be an effective way to control seizures and could possibly allow pregnant women to use lower doses of epilepsy medication. However, the safety of this still needs to be examined.8
Work With Your Medical Team
It is vital that anyone using this diet for a seizure disorder do it under the supervision of an experienced physician and dietitian. Many individual variations can influence the exact diet recommendations for each person, and coordinating this eating plan with medications can be tricky. It’s not something you should ever attempt on your own.
A Typical Day’s Menu
Below is a shortened description of a menu appearing in the 2015 Pediatric Annals article, “The Ketogenic Diet: A Practical Guide for Pediatricians.” It’s meant to give the idea of what children eat on the diet, not serve as an exact prescription. Remember, all of these foods are carefully weighed and measured.
- Breakfast: Eggs made with heavy cream, cheese, and butter; small serving of strawberries, pineapple, or cantaloupe
- Lunch: Hamburger patty topped with cheese; cooked broccoli, green beans, or carrots with melted butter; whipped heavy cream
- Dinner: Grilled chicken breast with cheese and mayonnaise; cooked vegetables with butter; whipped heavy cream
- Snacks: Whipped heavy cream, small servings of fruit, sugar-free gelatin
Variations substitute coconut oil or MCT oil for some of the heavy cream and butter.
Eating While at School
With a school-aged child, keeping them on the diet during the school day is difficult but essential. Thinking and planning ahead can help you be successful. You may want to try some of the following strategies:
- Talk to your child: Make sure your child understands the diet and why sticking to it is essential. Let them know they shouldn’t trade food with other kids. As hard as it is, they also shouldn’t eat food from vending machines or treats handed out in class.
- Talk to the school: The teacher, guidance counselor, nurse, and administration all need to be aware of your child’s special dietary needs (as well as other health-related matters). You’ll want to have regular conversations with them, and you may want to have a 504 plan or individualized education plan (IEP) in place as well.
- Become a planner: Gather several recipes for appropriate meals that can make convenient, easy-to-pack lunches. If possible, you may want to provide appropriate treats for your child for holiday parties and other special events that you may know about ahead of time. The Charlie Foundation and Clara’s Menu are good resources for child-friendly keto recipes.
- Educate family members: It’s important that family members and any regular caregivers know how to prepare a meal for the child with epilepsy.
- Establish routines: The timing of meals and snacks needs to be consistent in order for your child’s glucose levels to remain as stable as possible. You may need to work with your child’s teacher(s) on this.
- Involve a friend: Having a friend at school who understands the importance of your child’s diet may help them feel less awkward about being “different” and give them someone to lean on for support when needed. Make sure your child is OK with this and give them input on which friend to choose.
You’ll also want to make parents of your child’s friends aware of the special diet and that what some people may consider “a little harmless cheating” may not be harmless at all. It’s a good idea to provide food for your child to take to parties and playdates.How to Raise Kids Who Are on a Special Diet
Alternatives to the Super-Strict Ketogenic Diet
The Modified Atkins Diet is a popular alternative that helps many who find the ketogenic diet too difficult to adhere to. This diet is far less restrictive, as calories, fluids, and protein are not measured.9
The diet begins with 10 grams of carbohydrate per day for the first month, which slowly increases to 15 or 20 grams. It is similar to the very strict induction phase of the standard Atkins diet.
Research suggests participant achieved better seizure control when on the KDE. A 2016 study agreed that this is the case for children under 2, but that the diets have similar outcomes for older children. It also noted that the modified Atkins diet has fewer serious side effects and better tolerability.10