A support blog for parents of children on the medical ketogenic diet for intractable epilepsy. KetoCal® is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider to determine if KetoCal is right for you.
Medical ketogenic diet chef, Rachel Finn, came up with these
kid-friendly recipe ideas that your little ones will love. From chocolate
donuts to pizza bites, these are sure to please even the pickiest of eaters. As
always, talk with your child’s healthcare provider to determine if these
recipes are appropriate for your child.
KetoCal is a medical food for the dietary management of
intractable epilepsy and is intended for use under medical supervision. Talk
with your healthcare provider about whether KetoCal is right for you.
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 themedical 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.
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.
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 theketogenic 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 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.
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.
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 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 theketogenic 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.
This blog post is brought to you by Nutricia North America.
The medical ketogenic diet should be used under medical supervision.
It is a day I won’t soon forget. March 2013, Reagan and I took a girls’ road trip to Connecticut for my cousin’s baby shower. Reagan seemed off, and I attributed it to traveling and not being in her own space. She was restless and found it hard to sleep in a different crib. I scooped her up and had her lay with me. I awoke to her making odd sounds, drooling and grey, her body seemed limp, and she was unresponsive. An ambulance arrived soon after, and we were taken to a local hospital to hear the words no parent wants to hear: “Your child had a seizure”. Here I was in a city several hours from home, with my 16-month-old child, without my husband, terrified of what had just happened. Thankfully all of my family was in town for the baby shower, and my mom, aunt, and sisters sat with me while I ran through Reagan’s already extensive medical history with the pediatric neurologist. Was she born full term? No, she was considered a late preterm baby. Was she meeting her milestones? No, she had fine and gross motor delays, as well as speech delays. Is she followed by a neurologist? Yes, and recently had an MRI, which didn’t show anything abnormal.
Yet, here we were. Reagan had experienced her first of many seizures. Reagan was transported by ambulance from the hospital in Connecticut to our hometown children’s hospital. We were later discharged with emergency medication and instructions for what to do if another seizure were to happen. The nights and weeks following I slept on Reagan’s floor next to her crib, terrified of another seizure. Four months later, another seizure followed, as well as another ambulance ride and hospital stay. Two months later, after a move to Pennsylvania, yet another. Then came the diagnoses: epilepsy, as well as cerebral palsy. It was a shock to the system. What did this mean for my nearly two-year-old? How would we manage this? Would she have a full life?
Reagan started a medication, and any parent knows giving a medication to your young child can be like pulling teeth. But we soon learned the tricks of the trade, making sure she was getting the doses when needed. The first few months came with sleepless nights, feeling on edge and always wondering when the next seizure would come. And they came, almost like clockwork every four months. That “honeymoon period” of a seizure every four months lasted about a year and a half. Then the seizures started to pop up more frequently, when Reagan was sick, when she was tired, and when she was overheated. A second medication was added onto the first, and we achieved eight months of seizure freedom. With our neurologist, we started to wean Reagan from the initial medication. Unfortunately, that put us into a downward spiral of seizures and medication side effects. A new medication was introduced, and seizures came every two weeks. A new medication came shortly after, and it slowly helped to space the seizures out. After months of the medication being just okay, the neurologist suggested adding in another medication. With that came side effects that included extreme fatigue and loss of cognition. My little girl was hiding in plain sight, in a heavily medicated fog. For several months we worked through finding the right dose and finally it came. The combination of those two medications has bought us three solid months of seizure freedom, but the side effects were still there. And while some would consider that success, we didn’t. For us, success was being both seizure-free AND side effect free.
Enter the Medical Ketogenic diet
At the end of 2018, at a routine neurologist appointment, my husband and I expressed our concerns about the side effects these medications were having on Reagan. She gave us three options: the medical ketogenic diet, VNS, or brain surgery. We weren’t ready for surgery just yet and given that I had some knowledge of themedical ketogenic diet and its success rate with children living with epilepsy, we knew that would be our next step. The months leading up to Reagan’s inpatient stay to begin the medical ketogenic diet, we prepared Reagan for her new lifestyle. We explained to her this special diet could help make her feel better. We also went over the list of her approved foods and involved her in the appointments with the dietitian. By the time we entered the hospital, she was ready, even though both my husband and I were anxious. During the five-day-stay, Reagan acclimated well to her new diet and enjoyed visiting the hospital’s Kids’ Club House, watching movies and making friends with the nurses. She even got to visit the kitchen with the dietitian to make KetoCal®pancakes and a smoothie.
Today, Reagan has been on the medical ketogenic diet for almost five months. She loves the food, knows her schedule and knows that she must complete each meal. She’s always been a little foodie and often asks me to contact the dietitian for new and exciting snacks and meals. The first month was hard on our family. The constant weighing and measuring were time-consuming and a little emotional. But now we are in a groove, even eating out at restaurants and managing holidays. Reagan maintains good seizure control, and we’ve seen so many additional positive changes. A little bit of that medicated fog has lifted already, she has increased attention to tasks, and those skills she seemed to have lost are coming back. The best part? We just received the go-ahead from Reagan’s neurologist to wean her from one of the medications! Since this was our main motivation for trying the medical ketogenic diet, we are thrilled!
Thinking back to that Mom who was scared and wondered what
this would mean for her then two-year-old, I would tell her that epilepsy is a
part of Reagan, but it does not define her. I would tell her that you will
manage this head-on and become a better, stronger person and an advocate not
only for Reagan but for all kids living with epilepsy. Does Reagan have a full life? Absolutely! Does her life look different than the
neurotypical child? Yes, but Reagan has faced each and every one of these
challenges from MRIs, to frequent doctor and therapist appointments, to
medication changes to the medical ketogenic diet, head-on with a smile on her
face. And when asked about her life, her response is “it’s fun!”
Erin Monast lives in the Philadelphia suburbs with her husband Travis, their daughter Reagan and dog Tag. She writes the blog, This Is Epilepsy and is inspired every day by the strength and perseverance of Reagan.
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.