ketogenic-diet-for-epilepsy

Tomas’ Epilepsy & Medical Ketogenic Diet Journey

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

ketogenic-diet-for-epilepsy

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

ketogenic-diet-for-epilepsy

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.

Sugar Alcohols: Are They Compatible with the Ketogenic Diet?

If you are following or considering a ketogenic diet or modified Atkins diet (MAD) for the management of intractable epilepsy, you may have heard talk about sugar alcohols and whether they are compatible with the diet. In today’s blog post, ketogenic dietitian Stacey Bessone will tell us more about sugar alcohols and what role they play with the ketogenic diets.


Sugar alcohols are a specific type of carbohydrate called “polyols”. Sugar alcohols are naturally occurring in fruits and vegetables and often added to foods as a reduced-calorie alternative to sugar. Some common sugar alcohols you may see in food ingredient lists include:

  • Malitol
  • Sorbitol
  • Isomalt
  • Xylitol
  • Erythritol

It’s important to be aware that some sugar alcohols may cause some people to experience bloating, gas and diarrhea, even when consumed in small amounts.

Sugar Alcohols & Glycemic Index

Interestingly, most sugar alcohols are incompletely absorbed in the small intestine, so they do not raise blood sugar the same way as sucrose (table sugar). However, since they are partially absorbed, they may affect blood glucose levels to some degree.   This can be observed by looking at the glycemic indexes of sugar alcohols compared to sugar. Glycemic index is a measure of the increase in blood glucose when a food is digested and absorbed. It is based on a numeric scale from zero to 100, where the glycemic index of glucose (a type of sugar you get from foods and the form that your body uses for energy) is 100. The glycemic index of sucrose (table sugar) is around 65, whereas the glycemic indexes of the main sugar alcohols are between 0 and 45. Therefore, sugar alcohols may raise your blood glucose, although not as much as sugars like sucrose and glucose.

[i],[ii]

One specific type of sugar alcohol, Erythritol, is metabolized differently than other sugar alcohols. Erythritol is fully absorbed in the small intestine and excreted in the urine unchanged, so it does not affect blood glucose levels like other sugar alcohols. As you can see in the chart above, the glycemic index of erythritol is zero.

Calories in Sugar Alcohols

Sugar alcohols provide fewer calories per gram compared to regular carbohydrates. Sugar alcohols are therefore often used as a reduced-calorie alternative to sugar.

Sugar Alcohols, Erythritol, and the Ketogenic Diet

So, are sugar alcohols allowed on the ketogenic diet and modified Atkins diet (MAD)?  Technically, most sugar alcohols should be counted as regular carbohydrates and kept to a minimum on the ketogenic and modified Atkins diets (MAD). Although they may affect blood glucose differently in different people, most sugar alcohols have the potential of raising blood sugar. The exception to this rule is erythritol, since it is metabolized differently and does not affect blood glucose.  I generally tell my ketogenic diet and modified Atkins diet (MAD) patients that when reading a food label for carbohydrate content, erythritol is the only sugar alcohol that can be deducted from total carbohydrate content. I also tell my patients that sugar alcohol can only be deducted from the total carbohydrate amount if erythritol is the only sugar alcohol used in a product. When other sugar alcohols are used in addition to erythritol, the sugar alcohol content cannot be deducted, so I tell my patients to read the food label’s ingredient list carefully.

Speak to Your Healthcare Provider

Each dietitian has his/her own protocols, so while I allow my keto patients to deduct erythritol but no other sugar alcohols from total carbohydrate content, your provider may have different recommendations. As always, it’s important to speak to your dietitian about which foods and ingredients are allowed for your unique diet.

– Stacey

For more information on the medical ketogenic diet for epilepsy, visit http://ketogenicdietforepilepsy.com/.

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

The ketogenic diet for epilepsy should be used under medical supervision.

[i] Regnat K, Mach RL, and Mach-Aigner AR. Erythritol as sweetener—where from and where to? Appl Microbiol Biotechnol. 2018; 102(2): 587–595.

[ii] Livesey G. Nutr Res Rev. Health potential of polyols as sugar replacers, with emphasis on low glycaemic properties.2003 Dec;16(2):163-91.

Corinne’s Story: Epilepsy & the Modified Atkins Diet (MAD)

My name is Corinne and I am currently working full time at a primary care doctors’ office in northern Virginia. I come from a very large family of 8 children and have 11 beautiful nieces and nephews. I recently got engaged and have been pretty busy planning a wedding with my fiancé, Michael. When I have downtime, some things I like to do include spending time with family and friends, seeing a movie, spending a day at the beach, exercising, and baking delicious keto-approved desserts!

Epilepsy Diagnosis

Six and a half years ago as a senior in high school, I was diagnosed with epilepsy after having had 3 tonic-clonic seizures (also known as grand mal seizures) in 1 month. Prior to the tonic-clonic seizures, I was experiencing auras for about 6 months, although I didn’t know they were auras at the time. If you aren’t familiar with auras, most are largely unique. For example, during my auras, my head turns to the right and the room moves. Sometimes auras are a warning that a bigger seizure is coming and sometimes they occur on their own. In my case, it’s a mini seizure that only lasts 5-10 seconds.

After various tests and scans had been done, doctors were not able to find a cause for the seizures. I was immediately put on medication, which helped to control the seizures. However, there were side effects that made life more challenging. The end of my senior year of high school was spent mostly in the nurse’s office sleeping due to feeling extremely fatigued and drowsy from the medications and the illness itself. I was also having difficulty thinking and keeping focus in class. My body slowly adjusted to the medications and I started to be able to do more, but I still did not have the same energy level that I had prior to my diagnosis of epilepsy. I stuck with the medications since they were controlling the seizures, but after about a year, I began to have auras again. Luckily, I haven’t experienced any more tonic clonic seizures, but I was having auras about twice a week.

I continued to have these auras at this frequency for about a year. At the beginning stages of my diagnosis of epilepsy, I truly believed this was going to be something I would outgrow. After 2 years, I began to realize that this could be something I may have for the rest of my life. My neurologist at the time ordered another electroencephalography (EEG) to see my neurological developments, and the results still confirmed the presence of seizure activity in my brain. It was at this point that I realized I should look into other ways to manage my epilepsy to be able to live my life to the fullest.

The Modified Atkins Diet

I did my research, and quickly found out about the modified Atkins diet (MAD) at Johns Hopkins. The modified Atkins diet is a slightly less restrictive version of the classical ketogenic diet. My neurologist at the time warned me that it was a pretty strict diet and could be challenging. I was willing to sacrifice certain foods in order to combat epilepsy and see if the diet would work better than the medication. I was very nervous, but also excited to try keto. I also knew that lots of bacon would be involved so I started to really look forward to starting it!

I began the diet in November of 2014 as a sophomore in college. I spent the entire day at Johns Hopkins learning about the modified Atkins diet and the plan that my new neurologist and dietitian had in place for me. I was given a limit of 20 net carbohydrates per day. My dietitian educated me that I only needed to count carbs, not fats or protein. I also would need to include supplements into my new diet such as a multivitamin, calcium and Vitamin D. My team at Johns Hopkins provided me with many great tools and resources in order to be successful on the diet.

The day after meeting with my new healthcare team, I charted what I would normally eat for 3 days. I had blood work done that would show my baseline labs, and then I began the diet. Now imagine having to find a keto-compliant meal three times a day in a college cafeteria! Fortunately, my college was pretty accommodating and was willing to make me a special plate at each meal. I gave a packet explaining the diet to the chef, but somehow still ended up with foods like corn, carrots, and potatoes on my plate each meal. So, most of the time I would end up resorting to the salad bar. I made it work! I would just add butter, olive oil, salt and pepper to everything they gave me, and it made it taste 10 x better! I found foods I could eat and got creative.

After having been on the diet for 3 months, I traveled to Rome, Italy to study for a whole semester. The diet was really new to me still, and I was still learning about the foods I could eat and the portions I could have. In going to Italy, I did not know Italian, nor did I understand the nutrition fact labels. At the restaurants, they would typically serve a 5 or 6 course meal, but usually I could only eat the salad and part of the entree. So, I would drench the salad in olive oil and Parmesan and butter up the meat, and it usually filled me up! Sometimes when I was really hungry I contemplated drinking olive oil right out of the bottle! In another instance, the waiter offered me strawberries because I could not have the yummy pastry that everyone else was having for dessert. I was very excited until he came out with a bowl of strawberries sprinkled with sugar on top. I wanted to cry and laugh at the same time. This is where the saying “That which does not kill us, makes us stronger” really rings true because after surviving on the diet in Italy, it was a piece of cake in the U.S. Well not exactly cake, but you get the point!

My Life Today

I have now been on the modified Atkins diet for four years. My auras have gone down from twice a week to once a month. I am not completely off the medication, but my dose has been lowered since the frequency of my auras has diminished. I think the key has been discovering foods and recipes that I can eat, rather than looking at all I cannot. I also love to make copycat keto recipes for carb-heavy foods, like pizza, chicken tenders, and desserts. I absolutely love to bake so I knew not eating sweets would be pretty hard. Thanks to Pinterest and foods such as almond flour, coconut flour, unsweetened chocolate and stevia, I have made some of the best desserts!

I think the hardest part of the diet is feeling left out in seeing others eat many delicious foods. I will say I have been jealous looking at what others can eat and the good health they are in. I am extremely thankful to my fiancé, Michael who has been doing the diet with me for the past two and a half years since we’ve been together. I no longer feel alone as if I’m fighting this battle by myself knowing that he will be there day in and day out. The diet is challenging, but difficulties create character, and now there’s no challenge too big for me!

Like I said previously, my last EEG was four years ago. The results were abnormal and showed signs of seizure activity. I recently had another EEG done in May of this year (2018). This was the first one I have had since starting the diet. The results of the EEG this time came back normal! My neurologist explained to me that this meant the diet has been working well. Since my epilepsy diagnosis, it seems apparent that in my case, the medication alone did not manage my condition well enough for me to have a healthy and happy lifestyle. The modified Atkins diet was the answer to my prayers. It was only when I started the modified Atkins diet in addition to the medications that I started to feel like myself again and was no longer in constant fear of possibly having another seizure. The diet has not been easy, but I understand that with every illness comes additional obstacles and sacrifices that must be made in order to achieve the end goal of good health. I feel like I have finally achieved that end goal and the hard work is really paying off.

Advise for Others with Intractable Epilepsy

My advice to others with epilepsy who are considering the ketogenic diet or modified Atkins diet would be to consult with your neurologist and consider the best way to manage your epilepsy that would give you the best quality of life. As I said before, the medications had terrible side effects for me and I did not have the same energy levels as I had prior to my diagnosis. With the modified Atkins diet, I have to sacrifice many foods, but the health of both my mind and body has improved tremendously and that makes it worth it to me.

-Corinne

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

The ketogenic diet for epilepsy should be done under medical supervision.

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

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

Interested in sharing you or your child’s ketogenic diet story? Email us at MyKetoCal@nutricia.com.