Managing Epilepsy Through Diet: A Q&A With Dr. Jason Lockrow
July 6, 2022
Epilepsy diets are medical treatment used to control seizures. Epilepsy diets are high in fat, adequate in protein and low in carbohydrates. There are many versions of epilepsy diets, though nearly all involve shifting the main source of energy for the brain away from carbohydrates and towards ketones mimicking the fasting metabolic response.
Ketones are the byproducts of fats and are produced by the liver when there is an inadequate supply of carbohydrates. Unlike most other organs in the body, the brain can utilize ketones as an alternative source of energy. Ketones can be produced with prolonged fasting, though these diets are intended to induce these changes — stably reducing carbohydrates and driving the production of ketones, or ketosis — in a sustainable manner. There are many theories as to why shifting energy metabolism of the brain towards ketones may lead to seizure reduction, though studies have repeatedly demonstrated its effectiveness.
The two most common epilepsy diets are the classic ketogenic diet and the modified Atkins diet (MAD).
- The classic ketogenic diet is the strictest of the epilepsy diets. It is calculated based on a fixed ratio of fat to carbohydrates plus protein. Typically, a regular diet has a ratio of 0.3:1. Ketogenic diets range from 1:1 to 4:1. It is calorie controlled, and food is weighed on a gram scale. This diet is most used in individuals who receive formula.
- The MAD is a more liberalized version of the classical ketogenic diet. It provides unrestricted protein, a carb restriction of 10 to 20 grams per day and fat with every meal and snack. Food is measured using household measurements, and it is most often used in individuals who receive food.
Fasting has been described as a treatment for epilepsy by Hippocrates and is referenced in the Bible, and the framework of the diets utilized today was described about 100 years ago. With the discovery of antiseizure medications, the diet fell out of favor, though there is a subset of individuals with epilepsy who do not respond to medications, and over the past 20+ years the diet has increasingly been seen as a way to reduce seizures even when medications are ineffective.
It can be quite effective. The earliest studies showed that the diet was able to control seizures in about half of individuals with epilepsy, and nearly 80% experienced some reduction in seizure activity. More recently the diet has been used more commonly in individuals who do not respond to antiseizure medications, and even in this population more than half of individuals will have some benefit to their seizures.
Q: Are there certain epilepsy patients we know will respond better to dietary therapies? Likewise, are there patients for whom it’s not a good option?
Epilepsy diets such as the ketogenic diet have been shown to reduce seizures across a range of epilepsy syndromes and seizure types, though it can be most effective in certain genetic epilepsies which involve glucose uptake in the brain, such as Glut1, as well as syndromes such as myoclonic astatic epilepsy, Dravet syndrome and Angelman syndrome.
There are cases in which the diet can be dangerous: there are metabolic syndromes that impact the ability to break down fats effectively, such as with fatty acid oxidation disorders, or otherwise do not tolerate fasting well, and in these cases children can decompensate quickly. We try to exclude these before starting the diet.
The diet certainly has its risks for side effects: It often worsens gut motility and can lead to constipation, nausea and other GI issues. Prolonged use puts children at risk for osteoporosis, kidney stones and hyperlipidemia. But most importantly, it should be thought of as a way to mimic fasting, and children are at risk for hypoglycemic episodes and decompensation acutely and for poor growth or even weight loss over the long term (something that may be advantageous in adults, though often to be avoided).
The goal of epilepsy treatment is sustained seizure protection, and while epilepsy diets can be helpful, they are often hard to maintain. Side effects may be a factor, but often it is the social challenges — restricting foods, navigating meals and snacks at school, etc., — that prevent long-term use of the diet.
Information on epilepsy diets has exploded online, and more and more families have expressed an interest in it, but starting an epilepsy diet without proper support often impacts the effectiveness and sustainability of the treatment and may even increase the risk of side effects. Because of these risks, we strongly encourage families to not start the diet on their own — they really need to work with a registered dietician, optimally as part of a ketogenic diet program. We have a team of dieticians, providers, nurses and social workers who try to determine if an epilepsy diet is the best option for a child, identify possible barriers prior to starting the diet and provide the education and support necessary for a family to be successful long-term.
We currently have more than a hundred children in our epilepsy diet program. Some may only be on the diet for several months, while others have been on it for more than 10 years effectively, and our goal is to ensure safety and consistency with the diet.
Yes. We currently see patients from across Washington, Idaho and Montana, and less frequently from other states. Our epilepsy diet program does receive referrals from outside neurologists, though in some cases we recommend a more comprehensive epilepsy evaluation first. This is because certain epilepsy types, genetic syndromes or structural brain lesions may have a different and more targeted treatment, such as a specific medication or surgery, that may be more effective. Those findings may not exclude the diet, though understanding the potential alternatives is important when weighing the risks and benefits of doing an epilepsy diet.
In our program it can take time to initiate a diet. Some of that is by design — we have multiple visits where we identify and try to resolve challenges before we start the diet, as well as set up education and training sessions prior to starting. Additionally, children who need to do a formula-based ketogenic diet are started in the hospital, which can take additional time to set up.
For ongoing management, our clinic is only at the main hospital campus due to the multidisciplinary nature of our work. But many of our visits with patients who are established in the program are now being completed via telemedicine, with labs and measurements done locally.