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Treating epilepsy with diets: Ketogenic diet as explained by Angela Samuels (RD, CNSC) - Feature Article

For this issue, we revisited the topic of the Ketogenic diet with Angela Samuels, RD, CNSC who specializes in dietary treatments for epilepsy. She is a Certified Nutrition Specialists (CNS); those who specialize in this are advanced (Board certified) nutrition professionals who are trained to work with obesity and chronic illnesses. We asked her questions about all diet options now available for epilepsy and then more specifically about the ketogenic diet.  

Can you tell us about the diet options that are now available to treat epilepsy?  Is there a reason why a patient might do better on one than the other? Why you might recommend one over another?

There are three main options for dietary treatment of epilepsy; Classic Ketogenic, Modified Atkins and Low Glycemic Index.  

The classic ketogenic diet is prescribed as a ratio of fat (in grams) to protein and/or carbohydrates (in grams), i.e. 4:1, 3:1, 2:1 etc.  It is calorie controlled and all food is weighed and measured on a gram scale.  

The Modified Atkins diet is a less strict variation of the Ketogenic diet.  Proteins and fats are free and may be eaten to satiety.  A goal is set for grams of carbohydrates that may be daily; i.e. 20 grams/day.

The Low Glycemic index diet is similar to the Modified Atkins diet in that proteins and fats are free and may be eaten to satiety.  The difference is that the carbohydrate allowance is more, 40-60 grams of carbohydrates per day, but they must all have a glycemic index less than 50.

The ketogenic diet is the gold standard for diet therapy given that it has been used the longest and has been studied the most.  However, I usually start by recommending the Modified Atkins diet first because it is easier to implement and adhere to than the classic Ketogenic diet.

Let's talk about the ketogenic diet some more since this is the original and best known of all these diets?  What is this diet all about? What are the typical ages of those who use this diet? Would this be a first choice for treatment or does this come after someone has failed other treatments?

The Ketogenic diet is 90% fat and as mentioned above is prescribed as a ratio of fat (in grams) to protein and/or carbohydrates (in grams), i.e. 4:1, 3:1, 2:1 etc.  It is calorie controlled and all food is weighed and measured on a gram scale.  

The ketogenic diet may be used for children as young as infants through adolescence.  The diet usually becomes an option after a patient has failed multiple trials of medications.

What sort of foods can be eaten when on this diet?  What must be avoided?  Are there products that can be purchased to add to the diet?

The diet can include all protein foods, such as beef, chicken, pork, fish, eggs and cheese.  All fats, including oils, butter, cream and mayonnaise are allowed.  Small amounts of fruits and vegetables are also incorporated.

High carbohydrate foods must be avoided such and bread, rice, pasta, crackers, and sweets.  Vegetables to be avoided include those high in starch; i.e. peas, corn, beans and potatoes.  All sweets, such as cakes, cookies and ice cream are excluded.  Patients much also be mindful of hidden carbohydrates in food items like ketchup, bbq sauce and salad dressing.  

The idea of being on a ketogenic diet is very trendy and popular in the weight loss and body building domains.  Due to a high market demand, many low carbohydrate products on the market can be incorporated into the diet.  These may include low carbohydrate, bread, tortillas and noodles.

How would someone start the diet? Do you recommend fasting in children who are less than 2 years prior to starting the diet? 

This diet is most commonly initiated in the hospital due to increased risk of acidosis and hypoglycemia.  The hospital admission usually lasts around 5 days.  During this admission, the patient's main energy source is switched from carbohydrates to fats.  As a result of the body using fat as energy, ketones are produced.  Ketones can then be measured in the blood and urine.  These measurements help us to assess if the diet is within a therapeutic range.  Patients are not fasted.  The diet is started at a low ratio and titrated daily based on patient tolerance and blood ketone levels.  

Note: The method of initiation may vary between centers

What might make the diet tough to stick to?  Are there side effects at the beginning when the body is becoming adjusted to the diet?  What would you recommend to deal with these?

The diet is hard due to the importance of precision.  It is time consuming to weigh, measure and meal prep.  It is also a shift from a traditional American diet which is hard to adapt to.  So much of our life events revolve around food, whether it be celebrations, social gatherings, holidays, etc.  It is so important to be prepared with appropriate foods as to not suddenly break the diet.  

During initiation, daily blood work is done monitoring blood sugar and acidosis.  These are typical side effects during initiation and usually resolve with supplements or on their own prior to discharge.

How soon after starting the diet, might someone see positive effects on seizure frequency or intensity?

Some patients see effects right away after initiation and others may take several weeks to see a benefit.  About half of patients will have a 50% decrease in seizure frequency.  30% of patients will have a greater than 90% improvement and 10-15% will be seizure free.  

How long can someone conceivably be on this diet?  Are there any long term negative effects?

We recommend that patients give a 6-8 week commitment to the diet to assess if it is helping.  Most literature recommends weaning the diet around the 2 year mark if it has been efficacious.  However, we have families elect to stay on the diet longer if it is helping and there have not been any ill effects.

Long term side effects may include, hyperlipidemia, constipation, and kidney stones.  The hyperlipidemia may be treated by changing the fat source that the patient is consuming from saturated fats, such as butter, cream and bacon, to healthy fats such and olive or flaxseed oil.  Constipation can often be remedied with extra fluids and/or the addition of medium chain triglycerides, such as coconut oil.  There are times that patients need a pharmaceutical intervention 


Thank you, Angela for providing us with such interesting and important information about this creative epilepsy treatment option.  


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