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.

tips for ketogenic diet for epilepsy

Keto Parents’ Advice for Families New to the Ketogenic Diet for Epilepsy

tips for ketogenic diet for epilepsyIs your family new to the ketogenic diet for the management of intractable epilepsy? If so, you may be looking for tips and suggestions to help you manage day-to-day. Oftentimes, the best advice comes from others who have been in your shoes. Using our social media accounts, we asked keto parents about what advice they would offer other families new to the ketogenic diet. Here is what they said*.

“Patience is key. So is persistence. It took 10 weeks of fine-tuning the diet ratio to completely stop our son’s seizures.”

“Simplicity! Don’t overwhelm yourself with a ton of recipes. Or recipes at all for that matter. Start with a few things while becoming familiar and expand as you feel comfortable. My son ate the same things nearly every day. Also, if you reach seizure freedom and it’s interrupted, don’t get discouraged!!! It’s the worst feeling ever but try to stay positive! My son started the diet at 3 and was on it for 2 years. He’s 15 now and seizure free.”

“Take your time, do your research, ask all the questions! This is a lifestyle not a quick fix. But it is totally worth every second 👌👌 My twins have been seizure free for over a year! Make it simple & as time goes on it gets easier! ♥♥♥”

“Don’t give up…work with dietitian and neurology to fine tune! I believe it works but one needs to be patient and work with your whole team!”

“It’s not as hard as you think”

“Take a deep breath, smile and buy a scale!!!!!”

“One step at a time.”

“Keep it simple, ask for help, be patient 💜💜”

“Go slow it’s a marathon not a sprint.”

“Never give up. Weigh and measure precisely.”

“Go to a place that has a keto clinic with a specially-trained dietitian and neurologist.”

For more tips on managing the ketogenic diet, check out these blog posts:
A Ketogenic Dietitian’s Tips for Families Getting Ready to Start the Ketogenic Diet
Time Management Tips for Keto Moms and Dads
Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

-Mallory

*Results with the ketogenic diet for the management of epilepsy may vary. Talk to your healthcare professional.

The ketogenic diet for the management of intractable epilepsy should be used 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.