Maya’s Story: Epilepsy & the Modified Atkins Diet

Hi, my name’s Maya, and I’m currently a full-time research technologist at the Johns Hopkins University (JHU) Sidney Kimmel Comprehensive Cancer Center. I’m also in school part-time, pursuing a graduate degree at JHU’s Bloomberg School of Public Health.

Life Before My Epilepsy Diagnosis

When I was in high school, my classes started at 7:20 am, so I had to wake up at 5:45 AM every day. With all the activities that I was involved in at the time, I often didn’t get to bed until almost midnight, and I was sleep deprived most of the time during school weeks. During my junior year, I began to have these spasms, usually right after I woke up, that caused me to drop my toothbrush or even drop my phone every so often. I told my parents about them, but they didn’t think much of them and thought they were due to lack of sleep. My pediatrician at the time also chalked up these spasms to lack of sleep

During that time, I was also preparing for my graduation in classical Indian dance (Bharatanatyam), and my dance teacher wanted me to shed the extra pounds that I had gained in the last few years so that I would have the energy and stamina to get through my three-hour dance recital/exam (Arangetram) in my senior year. So, I had put myself on a strict low-fat diet, and was really watching my calories.

I graduated from high school and got through my dance exam with flying colors, and soon I was off to college, which was located about an hour away from home. I was living in the dorm, but often came home on weekends and continued to participate in dance activities for my teacher’s school.

The Day that Turned My Life Upside Down

In my sophomore year at college, as my class curriculum became more difficult (in particular, Organic Chemistry!), I woke up a few mornings with my muscles so sore that I was unable to move. I had no idea why this was happening, but had little time to think about it. I tried my best to stay ahead of my studies, which meant frequent late nights and skipping meals.

Then came the day that turned my life upside down. One Friday in early October of my sophomore year, I took the train home after my classes were done to teach an evening dance class. After my parents picked me up from the train station, I got in my car to drive to the dance studio, which was about a 15-minute drive. I never made it there.

The next thing I remember is waking up in an ambulance, completely disoriented and thinking I was still on the train. I began to cry and asked for my parents. After that, I fell asleep again and woke up in the hospital hooked up to an IV, with a police officer sitting next to me. “You had a seizure, sweetheart. Can you hear me?” I learned that a couple of minutes after I pulled out of my parents’ driveway earlier that evening, while I was still on the residential street on the way to the main road, I crashed my car into a tree by the side of the road. I had experienced my first grand mal seizure (also known as a tonic-clonic seizure). According to witnesses, I was still convulsing as paramedics pulled me out of the car. I suffered barely a scratch on my nose. The air bag had deployed and saved my life. I had been very lucky indeed, because in a couple more minutes, I would have been on the freeway. My car – the cute little stick shift hybrid that my dad had recently taught me to drive –wasn’t so lucky though. The crash had pretty much wrecked the front end.

My Diagnosis: Juvenile Myoclonic Epilepsy

The weeks following the accident were a blur. It seemed like every other day was a new neurological test. The official diagnosis was Juvenile Myoclonic Epilepsy. This came as a shock since I was healthy in every other way. All those “spasms” I’d been having since high school were myoclonic jerks. The muscular soreness that I had

been experiencing some mornings in college was because I had had seizures during the night. The morning of the accident, I had had probably the most severe “spasm” (which I now know was a myoclonic jerk) – I had fallen flat on my face in the bathroom.

The day of my accident, I had been severely sleep-deprived. My parents didn’t know this, of course, or else they would never have allowed me to get behind the wheel of a car that day. The sleep deprivation had almost certainly precipitated the seizures, according to the neurologist. My neurologist also said that the combination of my low-fat diet and sleep deprivation had similarly been at least partly responsible for the myoclonic jerks that I experienced in high school.

Needless to say, my parents were in a state of shock too, and struggling to come to terms with this diagnosis and what was happening to their only child, who had been perfectly healthy until then. After the trauma of the accident and the relief that I had survived unscathed, this was like a double whammy. They began to ask everyone in their respective families if there was a history of epilepsy in any of my close relatives, since the neurologist said it was hereditary in the majority of cases. They found no instance of seizures in the previous two generations.

Medication Problems

I had been put on Keppra® since the initial diagnosis, and although the frequency of my seizures decreased drastically, the side effects began to take over and unravel my life. I was experiencing crippling lethargy and depression, often nodding off in my classes. My grades suffered – I was failing the first semester of my sophomore year of college!

My parents, who are also researchers at Johns Hopkins, sought a second opinion from a Johns Hopkins neurologist. They also wanted to find out if there was any other option for me beyond this medication that was ruining my college life. Coincidentally, they had watched a movie called “First, Do No Harm” starring Meryl Streep. The movie follows the story of Charlie, a young boy who was suffering from a severe form of epilepsy whose seizures were finally managed using the ketogenic diet at Johns Hopkins. My parents immediately contacted the Hopkins Neurology department, and I was able to meet with a new doctor within a couple of months of my accident. That’s how I met Dr. Mackenzie Cervenka.

The Modified Atkins Diet (MAD)

After my first appointment at Hopkins with Dr. Cervenka, we learned that there was a new trial being carried out on adult patients for a diet that is much more compatible to an adult lifestyle – the modified Atkins diet (MAD). It maintains the same concepts as the ketogenic diet but with a few variations so as to allow an adult to follow it easily. My initial excitement at this new diet was short-lived, however, when I learned that it precluded most Indian food and that I would have to abandon

the veganism that I had recently adopted as an avid animal lover. However, I wasn’t going to allow my epilepsy to control me; I was determined to control my epilepsy. My parents and I were invited to attend a presentation by the Hopkins Neurology Department to a group of prospective keto patients where they also gave us some tips and tricks for starting and sticking to the diet. KetoCal® was the first product introduced to us, and honestly it is still my go-to product when I need an extra boost of fat and nutrition in my diet.

The start of my diet happened to coincide with my winter break from school in December of 2014. My parents and I spent the break in Texas on a previously arranged vacation. The whole trip was a conglomeration of long, frustrating trips to supermarkets and specialty low carb diet stores across the Lone-Star state, while feeling horrible as my body adjusted to the almost complete lack of sugar/carbohydrates in my diet.

I remember spending about an hour and a half at a grocery store in Houston, reading the nutritional labels for everything – including foods labeled “healthy” and even “sugar-free” – and realizing that I couldn’t eat 99% of what was on the shelves. We went to a natural food store in Austin and bought some horrendous coconut paleo bread that I could not get down my throat, even after toasting the heck out it. We walked along the River Walk in San Antonio, and I couldn’t eat at a single restaurant along the way. The only things we did actually buy on the River Walk were some low carb protein shakes from a convenience store!

Seizure Control & Having My Life Back

After what felt like the longest two weeks of my life, I managed to somehow coax my body into ketosis. Thankfully, all my work and sacrifice were worth it. In April of 2015, I was able to celebrate 6 months seizure-free for the first time since high school. It was the best feeling ever. My depression went away, and my grades picked up. I felt like I had my life back. In the spring of 2017, I graduated on schedule with a Bachelor of Science degree. This November (2018), I celebrated two years seizure-free, and I’m hoping to begin reducing my medication soon.

Along the way, I also mentored a student with autism and volunteered at the local children’s hospital, where I spearheaded and raised $1,000 for their 2017 dance marathon fundraiser (where I danced for 12 hours straight). I was also Program Director for my university’s Autism & Neurological Disorders (AND) Initiative and held leadership posts at several student organizations and events. Additionally, I participated in the National Walk for Epilepsy every year. Best of all, I managed to land a research job at Johns Hopkins University right after graduation, where I currently work while taking a couple of years to figure out how to launch the next phase in my academic career.

This modified Atkins diet (MAD) has not only served as a source of freedom from my epilepsy, but it also became my inspiration. I aspire to become a physician who, among other things, specializes in administering this diet in more locations worldwide. I am currently studying mental health and hope to shed light on this aspect of patient care in those with seizure disorders.

Advice for Others with Uncontrolled Seizures

For those who are experiencing trouble in controlling their seizures or the side effects from their medication, I highly recommend that they speak to their neurologist about getting on the ketogenic diet or the modified Atkins diet (MAD). I was once in a place where I believed that the side effects were something I would have to deal with for the rest of my life. But as my dad said to me in the days after my accident, and what I‘ve had tattooed on my wrist since then: “This too shall pass.”

Due to this remarkable diet, the worst has indeed passed, and I couldn’t be more grateful. I’m currently training to run a half-marathon this December (2018) for the second time in my life – the first time was in my freshman year at college – a few months before I had my accident.

Thank you so much for reading my story!

-Maya

Disclaimers:

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.

KetoCal is a medical food and is intended for use 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.

Keppra® is a registered trademark of UCB BIOPHARMA SPRL. and is not affiliated with Nutricia. 

 

Are you interested in sharing your experience with the ketogenic diet or modified Atkins diet (MAD) for epilepsy? Contact us at myketocal@nutricia.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

 

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.

 

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