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.
A Q&A with Ketogenic Dietitian Stacey Bessone, RDN, LDN
Can you tell us a little about yourself and your work as a ketogenic dietitian?
I am originally from Tampa, Florida and came back after finishing my education in Miami at Florida International University. I have always worked in pediatrics for my almost 24 years as a registered dietitian. I worked in the same children’s hospital I work in now right out of school but left and came back in 2011 when I took a position to exclusively practice with the medical ketogenic diet. We developed our clinic and see patients from all over the state. We also do clinical research so we can study different aspects of the diet. About half of my patients are on the classical medical ketogenic diet and the other half are on the modified Atkins® diet (MAD). I enjoy teaching the modified Atkins® diet as it is outpatient and usually with adolescents. I enjoy my job immensely and would never choose to do anything other than the medical ketogenic diet. It is so rewarding and I have the best patients and families.
How long have you been a ketogenic dietitian?
I have practiced the medical ketogenic diet exclusively for the last nine years.
How many patients do you have on the medical ketogenic diet?
We usually have between 60 and 80 patients on one of the medical ketogenic diets at a time. Often we are teaching new patients while other patients may be weaning the diet.
What is the modified Atkins® diet (MAD) for intractable epilepsy?
The modified Atkins® diet for epilepsy is a carbohydrate-controlled diet in which a patient counts carbs (minus fiber) and is encouraged to eat more fat to promote ketosis. It is started as an outpatient (meaning the patient doesn’t need to stay in the hospital) and is simpler to begin than the classic medical ketogenic diet.
How is the MAD different from the classical medical ketogenic diet for epilepsy?
The MAD diet is different in that food is measured in household measurements like tablespoons and cups or by servings (versus using a gram scale for the classical medical ketogenic diet). Instead of focusing on the ketogenic ratio (as with the classical medical ketogenic diet), the focus is on counting carbohydrates throughout the day. Fat is encouraged to be added at every meal and snack. There is no restriction on protein intake or foods with no carbohydrate. Patients learn to read food labels and can eat out at restaurants. It is a great option for adolescents and families that are on-the-go.
What types of patients are good candidates for the MAD?
Your healthcare professional will work with you to select the most
appropriate diet option for your needs. In general, the modified Atkins® diet
can be a suitable option for older children, teens, and adults who may find a
restrictive diet more challenging. Also,
MAD is a good option for patients that need diet intervention immediately and
may not be able to wait for a hospital admission to do the classical medical
While not appropriate for all situations, the MAD can have a similar effect on seizure control as the classical ketogenic diet for some individuals. Most of the research shows that nearly 50% of patients on MAD have about a 50% or more reduction in seizures.
About what percentage of your keto patients are on the MAD?
About half of my patients are on the MAD.
How did the MAD come about? When was it started? Where did the idea come from?
In 2003, Dr. Eric Kossoff, a neurologist at Johns Hopkins Medicine in Baltimore, developed the novel form of the medical ketogenic diet after a patient on a classical medical ketogenic diet came for a follow up visit and had not been weighing his food and had been following the diet “loosely”. Surprisingly, the child was still in ketosis and doing very well. Following that patient, there was a young girl who was started on the Atkins® diet in advance of starting the classical diet and achieved ketosis with seizures stopping after three days. These patients had good seizure control so Dr. Kossoff investigated the less strict “modified Atkins® diet” with a formal study. He found that it was a viable option to manage epilepsy with similar results to the classical medical ketogenic diet. I am happy to be part of the research team at Johns Hopkins with Dr. Kossoff (and dietitian Zahava Turner, RD, CSP, LD) for the past several years through my hospital’s partnership with Johns Hopkins Baltimore.
What are the biggest challenges for your patients following the MAD?
The biggest challenge for patients on MAD (or any other medical ketogenic diet) is sticking to the carb count and not eating any foods that are not allowed. It can also be challenging for some patients to get enough fat. For some patients, a slip-up can lead to breakthrough seizures since the diet is helping to manage the seizures.
Is there any research on using KetoCal® with the MAD?
Yes. There was a study in 2011 in children that found using KetoCal with the MAD increased both fat intake and the ketogenic ratio (1.8:1) in comparison with MAD alone (1.01:1). A follow-up study in adults in 2018 showed that starting the MAD diet using KetoCal during the first month in a randomized protocol had better long term compliance and higher fat intake compared to those who did not use the formula.
Thank you, Stacey, for your insights about the modified
Atkins® diet for epilepsy!
Hear from patients who have tried the modified Atkins® diet:
Looking for a hospital or program that offers the medical ketogenic diet or modified Atkins® diet? Click here to find one near you.
Learn more about the medical ketogenic diet or modified Atkins® diet for epilepsy here.
Atkins® is a trademark of Atkins®
Nutritionals, Inc and not affiliated or endorsed by Nutricia North America.
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. Talk with your healthcare provider to determine if
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.