How is the Medical Ketogenic Diet for Epilepsy Different from the Keto Diet for Weight Loss?

The classical medical ketogenic diet for the management of intractable epilepsy was created in the 1920s at the Mayo Clinic. It became popularized in the 1990s thanks to the launch of the Charlie Foundation and the release of the movie First Do No Harm. With the recent popularity of the keto diet for weight loss purposes, many people may wonder how it is different from the medical ketogenic diet that is used to manage intractable epilepsy. While both have the same basic premise: low carbohydrates and high fat, there are many distinctions. In today’s post, we’ll describe the key ways that the medical ketogenic diet for the management of epilepsy is different from the mainstream keto diet that is used for weight loss.  

Medical Supervision

One major difference between the medical ketogenic diet and the keto diet for weight loss is that the medical ketogenic diet must be designed and monitored by a medical team, usually a neurologist and a ketogenic dietitian (a registered dietitian who is trained to manage medical ketogenic diets for epilepsy). Not only is the medical ketogenic diet typically initiated in the hospital, it is also monitored by the medical team on a regular basis to look out for side effects, to ensure nutritional needs are being met, and to assess the diet’s effect on seizure control. 

Diet Design

One of the key differences between the medical ketogenic diet for epilepsy and the keto diet for weight loss is the way the diets are designed. The classical medical ketogenic diet is designed according to the ketogenic ratio, that is, the ratio of the amount of fat (measured in grams) to the amount of combined carbohydrates and protein (also measured in grams). The exact amount of carbs, fat, and protein allowed on a classical medical ketogenic diet depends on:

  • The specific ketogenic ratio selected by the medical team
  • The patient’s specific daily calorie requirement
  • The amount of protein required to sustain the patient’s specific goal body mass

Therefore, no two patients on a medical ketogenic diet will have the exact same daily carb, protein, and fat requirements. In comparison, the keto diet for weight loss typically limits carbohydrates to a given amount or aims for a certain percentage of calories coming from carbs, protein, and fats. If you were to compare the two diets according to the number of daily carbs and protein allowed, the medical ketogenic diet will typically be much lower in carbs and protein, and much higher in fat. Note that there are less strict variations of the classical medical ketogenic diet, such as the modified Atkins diet, but even these versions of medical ketogenic diets will be much lower in carbs and higher in fat compared to a keto diet for weight loss.

Protein Restriction

Another difference between the two diets is that the classical medical ketogenic diet restricts protein in addition to carbohydrates. As described above, the amount of protein allowed in the medical ketogenic diet depends on the patient’s goal body mass. In other words, they are allowed just enough protein to sustain their body’s muscle mass but no extra. A keto diet for weight loss typically focuses more on limiting carbohydrates, with less restriction to protein intake.

Diet Initiation

Unlike the keto diet for weight loss, the medical ketogenic diet for epilepsy is generally initiated in the hospital under close medical supervision. Because of the very strict limitation of carbohydrates and protein, the level of ketosis reached on the medical ketogenic diet is much higher compared to a keto diet for weight loss. Therefore, it is essential that a medical ketogenic diet is initiated under medical supervision.

  • To ensure that the patient tolerates the selected ketogenic ratio
  • To monitor for and treat potential side effects like low blood glucose or vomiting
  • To allow the medical team to make adjustments to the diet as needed

This hospital time is also used to train the patient or their caregiver how to manage the diet once they go home.

Precision of Food Measurement

Another difference between the two diets is the precision with how foods must be measured. On the classical medical ketogenic diet, all foods and drinks must be measured to the tenth of a gram using a gram scale. For example, a meal may call for 29.2 grams of chicken breast, 50.5 grams of mayonnaise, etc. Every single bite of the meal must be consumed to ensure that the ketogenic ratio of the meal is accurate. With a keto diet for weight loss, foods can typically be measured with household measurements like cups, ounces, and tablespoons, and there is less concern about finishing the entire meal.

Sticking to the Diet

For patients following a medical ketogenic diet for epilepsy management, breaking the diet, even just a bite, can result in breakthrough seizures. Therefore, having a “cheat meal” or taking a week off for the holidays is simply not an option. Individuals following a keto diet for weight loss may lose weight-loss progress if they fall off the diet for a while, but the consequences are not so serious.

Accounting for Medications & Non-Food Products

With the medical ketogenic diet, the carbohydrate allowance is so specific that trace amounts of carbohydrates from medications need to be accounted for. Typically, when a patient starts the medical ketogenic diet, they are switched to variations of their anti-seizure medications with lower carb amounts (for example, switching from liquid form to tablet form). If there are still carbohydrates coming from medications, the carbohydrate allowance from foods will have to be adjusted to account for them. Oftentimes, the medical ketogenic diet team will recommend specific brands of self-care products that are lower or without carbohydrates (yes, the body can absorb trace amounts of carbs through the skin!). This may be especially important for items that go in the mouth (like toothpaste) or that are applied to large areas of the skin (like moisturizer or sunscreen). Individuals following a keto diet for weight loss generally don’t have to be this precise or careful about trace carbohydrates.

Length of Time

People who follow a keto diet for weight loss may follow the diet for a certain amount of time to lose weight or they may follow a keto lifestyle permanently as a method to maintain weight. On the other hand, patients on a medical ketogenic diet for epilepsy management will usually follow the diet for a specific period of time. In most cases, if a patient’s seizures are controlled on the medical ketogenic diet for 2 years, the medical team will recommend weaning off of the diet with the hope that they can come off the diet and maintain seizure control. However, with certain medical conditions, like Glut-1 Deficiency Syndrome, the medical ketogenic diet must be maintained for longer periods of time or even for life.

Hopefully this post gives you a better idea of what makes the medical ketogenic diet for epilepsy different from the more widespread keto diet used for weight loss purposes. For more information on the medical ketogenic diet for epilepsy, visit www.ketogenicdietforepilepsy.com.

– Mallory

This blog post is brought to you by Nutricia North America.

The medical ketogenic diet should be used under medical supervision.

To learn more about the medical ketogenic diet for epilepsy, visit www.ketogenicdietforepilepsy.com.

Hailey’s Story: Epilepsy & The Medical Ketogenic Diet

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About Me:

My name is Hailey, a twenty-four-year-old college student happily living on the coast with my adventurous boyfriend of five years and our goofy husky German shepherd. I am a student yoga teacher and am pursuing my bachelor’s degree in Science Education. While at first glance I may look like a typical, healthy, 20-something college student, people are usually shocked to hear what I’m going through medically. You see, I have uncontrolled seizures, also known as intractable epilepsy, along with a neuro-cardiac condition called Dysautonomia. My seizures started mid-summer when I was thirteen years old. From there, my health rapidly declined. At my worst, I was having over forty seizures daily. I had to wear a helmet and was wheelchair bound. We tried several different anti-seizure medications, but unfortunately, nothing stopped my seizures.

Worsening Seizures:

When I was eighteen, in a dental office, I had a seizure and my breathing did not return. Thanks to the quick action of the dental office and first responders, I survived and recovered after just three days on a ventilator in the Intensive Care Unit (ICU). During my time there, my doctors recommended that I start eating healthier and exercising.  As a kid my diet was terrible, eating lots of junk food. However, I was a healthy weight, so my parents never worried. With low expectations, but desperate, I “cold-turkey” changed my diet, eating mostly whole foods and cutting drastically back on processed foods. I started feeling much better. I joined the swim team, and fell in love with yoga, rock climbing and jiu jitsu (sorry mom). 

The Medical Ketogenic Diet:

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Although exercising and eating healthier made me feel better, I was still having one to two seizures per month. This meant that I still couldn’t drive. Therefore, I became motivated to reduce my seizures further. I began researching and stumbled upon the Charlie Foundation and the medical ketogenic diet. I was eager to give the medical ketogenic diet a try. However, my doctors initially tried to steer me away from it, warning that it was extremely difficult and limiting. I explained to them that my seizures were very difficult and limiting too! Ultimately, we mutually agreed to try it, with the help of a medical ketogenic dietitian who I found on the Charlie Foundation’s Website. The first week or two, the diet was very difficult. I experienced flu-like symptoms and suddenly had insomnia. I would lie in bed crying because all I wanted was a box of bread rolls. I never thought I’d cry over food. 

As time went on, the ketogenic diet got a lot easier and I learned what I could and couldn’t eat, and how much. My dietitian helped me obtain a prescription for KetoCal 4:1 LQ formula to reduce the stress of meal planning since I was attending work, school, and swim team. For the first time since my seizures began, I went two months seizure free. While the diet wasn’t completely effective, it did make a big difference on the frequency of my seizures! I was on the ketogenic diet for just over a year and a half when doctors purposely had me cheat to induce seizures for testing. After that, I lost motivation to continue the diet and fell off track for a few years. However, my seizures became more frequent, so I decided it was time to return to the ketogenic diet. I have been back on the medical ketogenic diet since July of 2019 and this time, with a better mindset and motivation. 

My Life Today:

Since being on the medical ketogenic diet the second time, my new seizure-free record to beat is about three and a half months, or 110 days. I have had a few accidental carb ingestions that have lowered my ketones enough to cause breakthrough seizures. While unfortunate, these instances motivate me to continue the diet and are great examples of how powerful the diet is, at least for me! My mind feels clearer and less fuzzy on the medical ketogenic diet. I also find that it is easier to maintain a healthy weight because getting into bad eating habits is not an option when you’re on the medical ketogenic diet. 

We live in a society where we want a quick fix. However, if you’re reading this, I’m willing to bet that your quick fixes are not working. I’m learning that the medical ketogenic diet really isn’t too difficult. In a pinch, I can walk into a gas station and purchase nuts, salami and cheese. I can find an avocado just about anywhere if I need a snack. If I’m feeling lazy, I can just eat some spinach mixed with tuna and mayo. At most restaurants I can order plant protein with fats and veggies. If I’m really in a hurry, I just grab a KetoCal 4:1 LQ from the fridge. KetoCal also takes the stress off traveling. If I’m in the mood for pancakes, bagels, or sweets, I can make recipes that are ketogenic, using KetoCal 4:1 powdered formula, coconut flour, or almond flour. 

You can follow my ketogenic diet story on my Instagram page at https://www.instagram.com/keto4seizurefreedom/.

Advice for Other Adults Considering the Medical Ketogenic Diet for Epilepsy Management:

My advice to other adults who are considering the medical ketogenic diet for seizures? Don’t let anyone tell you doing the ketogenic diet for epilepsy is too hard. Also, don’t get too down on yourself if you accidentally get kicked out of ketosis. We try our best but accidental ingestions happen. 

– Hailey

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.

KetoCal is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision.

Please note that this is one individual’s report of her experience with the medical ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss with your healthcare provider if the medical ketogenic diet is right for you.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

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Tomas’ Epilepsy & Medical Ketogenic Diet Journey

The Ketolicious Kid, Epilepsy Warrior (aka: Tomas, the baseball player)

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Tomas is 4 ½ years old. He loves everything baseball, outdoors and his family. He says he’s going to be a baseball player when he grows up and that we’re all going to see him on TV one day. He is my 3rd child, the sweetest of all my kids, the baby of the family and the one that was supposed to be on auto-pilot. Tomas was the best baby. He got dragged around everywhere that his older siblings had to go: school events, soccer practices, gymnastics competitions, etc. He was a typical baby and toddler, and everything was perfect, or so it seemed. I’m not sure when, but I started feeling that there was something off about him, something different than my other kids. I didn’t know how to describe it and people told me I was crazy. So, I tried to shake the feeling, and convinced myself everything was ok. Until …. April of 2018.

Epilepsy Diagnosis

We were at my parents’ house celebrating my sister’s engagement. Her fiancé was about to give a toast when, THUD, Tomas collapsed. He was having a seizure, a BIG one. It lasted about 3 ½ minutes but it felt like an eternity. What came after was worse than the seizure itself. He was lethargic and confused, talking but not making sense and then fell into a deep sleep. I watched him all night. The next day he woke up as if nothing had happened – talking, playing, asking for breakfast. I was so relieved, but it was short lived. As I set his breakfast down, he had another seizure. I rushed him to the hospital where he was admitted. There he underwent a series of tests (VEEGs, MRIs, blood work), and we were acquainted with all the -ologist and -icsts the hospital had to offer. We were told that he had epilepsy. The VEEG showed he was having 3 types of seizures (I didn’t even know there were 3 different types of seizures). It was happening all the time and we didn’t even notice. They threw out a few terms for possible diagnoses, said further testing was necessary, put him on anti-epileptic medications and sent us home with instructions to follow up in a week or two.

Intractable Epilepsy

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The next four months were a blur of increasing seizures, neurologist appointments, VEEGs, and changing and adjusting medications with little to no improvement in seizure control. All the testing came back negative and there was no explanation for his seizures other than “intractable” or “refractory” epilepsy (meaning not responding to medications). We were losing our little boy; he was in a fog of medications and seizures. This was when doctors suggested the medical ketogenic diet as a way to help manage his seizures. They told us that it would involve an initial hospitalization of 1 week and then a strict diet, in which I would have to measure food to the tenth of a gram (0.01 g) for the foreseeable future. I was skeptical. I felt there was NO way that I’d be able to feed my child in this way, especially working full-time and with the crazy hectic life we lived. But I was also desperate and willing to try anything.

The Medical Ketogenic Diet

We started the ketogenic diet in the hospital on August 20th. We had a rough start; Tomas did not tolerate the diet well at first. Thankfully we were working with an amazing team of neurologist and dietitians through the hospital’s Keto Clinic that knew just what to do. Instead of starting at our goal ketogenic ratio, we started the diet gradually. We began with the Modified Atkins Diet and worked our way up to the goal ketogenic ratio slowly, allowing Tomas’ body time to adapt. It took several months, from August to December, to work up to where he needed to be. Those months were difficult. Every few weeks we were changing ratios and adapting meals, tracking his weight and monitoring seizures. I wanted to quit on many occasions, but what kept me going was the small changes I started to notice in Tomas. Although he was still having seizures, the fog seemed to be lifting. I’d get glimpses of who Tomas used to be. This was the trend: small improvements and fewer daily seizures, until January 27th when my husband and I realized that we hadn’t recorded a seizure since December 22nd!!! Fast forward to February 14th – Tomas had his first “normal” 24-hour VEEG since his epilepsy diagnosis.

Tomas Today

Tomas is currently on a 4:1 ratio ketogenic diet and has been seizure-free for 3 months. I am so amazed with how the ketogenic diet has changed our lives. I meal prep weekly for the family and plan out Tomas’ daily meals in advance. I own multiple gram scales and more silicon molds and spatulas than I can count, but I wouldn’t have it any other way. I’ve learned to cook/make things I never thought I could, such as keto bagels, pizza, and even blueberry muffins (thanks to KetoCal®). We are lucky to have resources out there like KetoCal that make a restrictive diet feel not so restrictive and make it easier to be a mom to a Keto Kid. We juggle soccer, baseball and gymnastics, eat out, and travel. I didn’t think we would be able to do these things with such a restrictive diet, but I have found that it just takes a little prep work and creativity. Yes, there are still hard days with managing the diet, but the benefits outweigh the challenges. I never thought that our quality-of-life would improve the way that it has. I’ve met amazing people on similar journeys to ours and had opportunities to help others (like writing this blog post).

Advice for Others Struggling with Intractable Epilepsy

My advice for anyone out there suffering from seizures is to give the ketogenic diet a chance. Ask your medical team if its right for you and your family. Be patient and take it one gram at a time, one meal at a time, and one day at a time. Find support and don’t go at it alone because you are NOT alone. There is a huge keto family out there eager and willing to provide advice and support, you just must know where to look. And if you’re reading this now, you are already on the right path. Who knows in what ways the ketogenic diet might improve your life. Good Luck!
Below are some links to some helpful sites and groups:

– Lourdes

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.
KetoCal is a medical food and is intended for use under medical supervision.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.