Breastfeeding Options and Ketogenic Diet Therapy

Author: Laura Dority MS RD LD

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For decades infants with epilepsy were not considered good candidates for ketogenic diet therapy (KGD).  It was thought that infants were at a higher risk of side effects (specifically low blood sugar) and were unable to produce adequate ketones for effectiveness – in other words the risks outweighed the benefits. 

But the reality is – infants ARE GREAT patients! In 2016 the consensus statement, “Ketogenic Diet Guidelines for Infants with Refractory Epilepsy”, was published in the European Journal of Pediatric Neurology.  This was a collaboration of 15 experts (doctors, dietitians and researchers) in the field of ketogenic diet therapy.  Since these guidelines were released, more ketogenic diet programs have started implementing the diet in the infant population.  Data has grown and outcomes continue to support that infants are ideal patients.  

What about Human Milk? 

Isn’t human milk the best choice for infants? Does this still hold true for infants with epilepsy? Don’t get me wrong – breastfeeding is great and likely the best choice for most infants. Unfortunately, human milk is not naturally ketogenic when comparing it to what we need for a medical ketogenic diet.  Yes, it is high in fat but it’s not low enough in carbs to induce ketosis. 

What about changing mom’s diet? Can we put mom on a ketogenic diet and change the composition of her milk to be higher in fat and more ketogenic? I have tried this several times and unfortunately have not been successful. When we have attempted this option – we placed the mom on a modified Atkins diet (20 grams of net carbs or less) and achieved positive ketosis but the human milk composition did not change. 

However, just because we haven’t been successful yet – doesn’t mean it’s not possible. I think this option warrants more research. What if the mom went on a more restrictive diet such as “classic” or net carbs 10 grams or less? If mom is in ketosis, would the infant receive benefit from drinking human milk with ketones in it regardless if the fat/carb composition didn’t change? It’s hard to say and these are great questions we need to study as a KGD medical community.   

What are the Options for Incorporating Human Milk into a Ketogenic Diet? 

While you can’t exclusively breastfeed on a KGD, there are a few ways that you can be successful in incorporating human milk into the plan.  

Option 1: Expressed Human Milk

Likely the “easiest” and most accurate method is for mom to pump and then to utilize the expressed human milk as part of the KGD formula mixture. Depending on the infant’s age, weight, keto ratio, you can likely use anywhere from 3 to 6 ounces of human milk a day. While this is not a large volume, I always emphasize that any amount of human milk is beneficial. 

Here is an example of a 24-hour batch of keto formula with expressed human milk that is a 2.75:1 ratio and 27 calories per ounce.   

• 120 mL (4 ounces) expressed human milk

• 420 mL KetoCal or KetoVie 4:1 Formula 

• 240 mL water (to create a total volume of 780 mL)

Keep in mind that human milk is a combination of foremilk and hindmilk.  The foremilk is the first milk that is released and contains more water and less fat. The hindmilk is the milk at the end of the feed and is higher in fat. One way to try and get a higher fat human milk is to have mom pump for 3 to 5 minutes to release the foremilk. Some moms can also tell when the milk changes by noticing the thickness and color change to a creamier white.  Then you can use the hindmilk only into the keto recipe. This is usually only an option for a mom that has a good milk supply. 

Option 2: Nursing 

Another option that is not as accurate as using expressed human milk is to have the infant nurse at the breast for a set amount of time. The amount of time is going to vary drastically between infants based on efficiency of eating, age, and weight. You can start by weighing the infant before and after a feeding and document the amount of time the feeding lasted. This will give you a general idea of how much volume is consumed in a set time. Then you start to reduce the amount of nursing time and follow with a ketogenic formula.  

Let’s look at an example – If an infant takes 4 ounces in a 15 minute nursing session, stat by allowing him to nurse for 5 minutes and then follow with a 3 ounce 4:1 ketogenic ratio bottle. Then adjust based on weights and ketone levels.  Here are some adjustments you may want to consider: 

• Reduce the nursing time

• Increase the ketogenic ratio of the formula – consider 4.5:1 or 5:1

• Utilize medium chain triglycerides (MCT) into the formula 

• Allow nursing at every other feeding only. You would still follow with a keto formula bottle but at the non-nursing feedings, the infant would just get the formula in the bottle. 

• Consider pumping the foremilk so that when the infant nurses they get more hindmilk

Overall, you will need to adjust, adjust, adjust and with some patience and vigilance you can be successful. At the end of the day though the goal is seizure control so if that cannot be achieved with nursing your next step would be to switch to pumping and using expressed human milk as part of the ketogenic formula.  

Option3: Use a Supplemental Nursing System (SNS)

A supplemental nursing system (SNS) can be used so that you can give ketogenic formula at the same time the infant is nursing.  With a SNS a small tube runs next to the mom’s nipple.  As the infant sucks, they will get human milk from the nipple and the ketogenic formula through the tube at the same time.  

Similar to nursing, this is not an exact method because you won’t know the exact volume consumed from the breast but you will know how much they get from the SNS. 

Like other options, you could have the mom pump for a few minutes to get the foremilk discarded and then utilize nursing with the SNS system. Another option would be to run MCT instead of keto formula through the SNS system – starting with a very small amount to assure tolerance. 

Keep in mind that one way is not the only way and likely what is successful with one infant will not be successful for the next! Incorporating human milk into a ketogenic diet takes practice, patience and a little finesse but is worth it. You have to start with a plan and tweak it daily until ketosis is achieved.  Then ongoing adjustments will be needed on a weekly/monthly basis to keep up with growth and development.  

Even with the best of intentions and multiple tweaks and adjustments, you may not be able to get the infant into adequate ketosis or obtaining seizure benefit.  At that point, it’s time to discontinue the human milk component and switch to all ketogenic formula which is more controllable. 

Maintaining the mother’s milk supply is important throughout the KGD journey.  Regardless of the keto plan, mom should keep pumping and storing her milk. Human milk can be stored in your freezer for up to 6 months. Then if the KGD is discontinued, she can feed her infant the stored milk and resume nursing. 

Are you a mom that used human milk as part of your ketogenic diet journey?  If so, leave us a comment and let us know how you were successful.  

If you are a parent reading this article and looking to use human milk in your infants plan, talk to your ketogenic diet team.  

If you are a ketogenic dietitian and are hesitant to incorporate human milk– reach out to other ketogenic dietitians and ask for help.  

References: 

Cole N. et al. Initiating and Maintaining the Ketogenic Diet in Breastfed Infants. Childhood Obesity and Nutrition. 2010 May; 2(3):177-80.

Le Pichon JB. Et al. Initiating the ketogenic diet in infants with treatment refractory epilepsy while maintaining a breast milk diet. Seizure. 2019 July; 69:41-43.  

Van der Louw E. et al. Ketogenic diet guidelines for infants with refractory epilepsy. Eur J Paediatr Neurol. 2016 July; 20(6):798-809. 

To learn more about a SNS: https://www.medela.com/breastfeeding-professionals/products/feeding/supplemental-nursing-system

Beat the Heat with Keto Popsicle Treats

By: Laura Dority, RD

Summer is here and so is the heat. It’s hot, hot, hot and finding keto friendly popsicles is near impossible! Even popsicles labeled “sugar-free” are not necessarily carbohydrate-free and cannot be used for someone following a ketogenic diet for epilepsy. To solve this dilemma, we got creative and put together several different keto popsicle options. Some of these recipes are strictly for hydration while others will give you a “cool” option on getting in extra fat. 

First, gather the following supplies:  

• Zipzicle ice pop bags – Reusable, easy-to-fill and hold about 3 ounces of fluid 

• Small funnel (helpful in filling the Zipzicle bags)

• Mason jars or other container you can close tightly for shaking 

• Small food processor or blender (only if using an avocado containing popsicle) 

• Permanent marker (for labeling) 

Hydration Popsicles

Ingredients:  

• Powerade Zero

• Crystal Light or other sugar-free drink powder 

• Water

• Heavy whipping cream 

• Monk fruit extract or other keto approved sweetener (optional) 

If you are looking for a popsicle option just for cooling off and do not need any fat or calories than simply take Powerade Zero or Crystal Light and dilute them with water and freeze. 

Powerade Zero Recipe (makes ~2 popsicles): 

• ½ cup (4 oz) Powerade Zero 

• ½ cup (4 oz) water 

Crystal Light Recipe (makes ~10 popsicles): 

• 1 individual packet 

• 4 cups (32 ounces) water

A slight variation on these recipes is to add a little bit of heavy cream in place of some of the water. Additionally, you can add monk fruit extract for a little extra sweetness.   

Powerade Zero and Heavy Cream Recipe (makes 1 popsicle): 

• ¼ cup (2 oz) Powerade Zero 

• + 2 Tbsp (1 oz) heavy cream 

• 2 drops monk fruit extract (optional) 

Nutrition: 1 popsicle is 100 calories and 12 grams fat 

If you need a lower calorie option, add more Powerade Zero or Crystal Light and less heavy cream.  Remember each Tbsp of heavy cream is 50 calories and 6 grams fat.  

Creamsicle Popsicles: 

Ingredients:

• Diet, caffeine-free orange soda (flat) 

• Heavy whipping cream 

• Unsweetened almond milk (vanilla or plain) 

Creamsicle Recipe (makes 1 popsicle): 

• 2 Tbsp (1 oz) heavy cream

• ¼ cup (2 oz) flat diet orange soda 

• Nutrition: 1 popsicle is 100 calories and 12 grams fat

Again, if you need a lower calorie option, add more of the soda and less heavy cream. You could also use unsweetened almond milk in place of the heavy cream to make a very low-calorie popsicle. 

Formula Popsicles: 

Ingredients: 

• KetoCal® 2.5:1 Vanilla  

• KetoVie™ 4:1 Chocolate or Vanilla 

• Avocado

• Water

• Unsweetened almond milk (vanilla or plain) 

If you have access to a ketogenic formula such as KetoCal® or KetoVie™ you can make great tasting popsicles packed with nutrition. I used KetoCal® 2.5:1 Vanilla and KetoVie™ 4:1 chocolate with avocado for extra fat. My two-year-old (who doesn’t normally like avocados) kept telling me it tasted just like ice cream and asked for seconds!   

KetoCal® 2.5:1 Avocado Recipe (makes ~ 5 popsicles): 

• 1 container of KetoCal® 2.5:1 Vanilla 

• 1 avocado 

• Blend together until smooth.  

• Nutrition: 1 popsicle is 140 calories, 13 grams fat, 3 grams protein, 5 grams total carbohydrate, 3 grams fiber (~2.6:1 ratio)  

KetoVie™ 4:1 Avocado Recipe (makes ~ 5 popsicles): 

• 1 container of KetoVie™ 4:1 Chocolate 

• 1 avocado 

• Blend together until smooth. 

• Nutrition: 1 popsicle is 140 calories, 13.5 grams fat, 2.5 grams protein, 4.5 grams total carbohydrate, 4 grams fiber (~4.5:1 ratio)

Don’t want to use avocado? No problem. You can freeze the formula right out of the carton, or you can dilute with water or unsweetened almond milk for less calories and fat. For example, you could 1 oz of formula and 2 oz of water or unsweetened almond milk.  This would cut your calories down from 140 per popsicle to ~45 calories.  

Heavy Cream Popsicles: 

Ingredients: 

• Heavy whipping cream 

• Water

• Unsweetened almond milk (vanilla or plain) 

• Monk fruit extract or other keto approved sweetener (optional) 

Another easy popsicle option is using different amounts of unsweetened almond milk and heavy cream with a keto approved sweetener.  

Heavy Cream Recipe (makes 1 popsicle): 

• 2 Tbsp (1 oz) heavy cream

• ¼ cup (2 oz) water

• 2 drops monk fruit extract (optional) 

• Nutrition: 1 popsicle is 100 calories and 12 grams fat 

Unsweetened Almond Milk Recipe: 

• 1/3 cup (3 oz) almond milk 

• 2 drops monk fruit extract (optional) 

Remember that unsweetened almond milk is a great way to get in your daily intake of calcium and vitamin D.  

Honestly these recipes are just the tip of the iceberg of the endless keto options for popsicles that can be used for hydration and for adding extra fat into the diet. These recipes were so simple and easy to make that even my toddlers were able to help.  After a few hours in the freezer they were ready to eat, and I had no complaints from the toddlers on that part either!

Leave us a comment with your favorite keto popsicle!

Meet McKinley, CDKL5 Warrior!

By Yessy Abolila

Our daughter, McKinley, was born at 40 weeks and one day. In every sense, my pregnancy was by the books. No complications while she baked in my womb and no complications during birth. She was born at a healthy 8 pounds and 11 ounces. I was able to breastfeed immediately and she gained weight perfectly. I was thankful for it all and my worries seemed to vanish once she arrived. Life, unfortunately, can throw you a curveball.

At 3 weeks old, we started noticing these odd movements. We first thought they were startle reflexes, but after a few days of consistently seeing them, we called McKinley’s pediatrician on a Saturday morning, and she suggested we take her to the emergency room as a precaution. The ER staff was kind and assured us it was reflux at first. However, once they witnessed those same movements, they admitted McKinley and our journey into the world of epilepsy began.

Although a brain ultrasound and an MRI confirmed McKinley’s brain was physically normal, an EEG would confirm she was in fact having seizures. The following weeks were a blur of second opinions, medications, more EEGs, and eventually, genetic testing. The week after Thanksgiving, when McKinley was barely 9 weeks old, we received her diagnosis—CDKL5.

Cyclin-dependent kinase-like 5 is a genetic disorder that essentially affects how one develops neurologically. One of its main characteristics is hard to control seizures. It is a rare disease and not fully understood. There is a wide spectrum as far as severity and no two children are alike. Some may never walk, talk, or be able to hold their head up unsupported. As one can imagine, the news was difficult to accept. The best advice we received was to become our daughter’s advocate. With no cure, we began our research to find the best treatment for her.

I had first heard of the ketogenic diet as a treatment for epilepsy when McKinley was around 3 months old. I brought it up to her neurologist, and he said it would only be successful with a feeding tube. Hearing that, I was disheartened but looking back now, I realize he simply didn’t have experience with it. Although the diet has been helping children since the 1920s, in my experience, it’s not a common course of treatment in South Florida.

I finally convinced her team of specialists to give it a shot after McKinley was on her third or fourth hospital stay at 4.5 months. She had already failed four AEDs—Phenobarbital, Keppra, Trileptal, and Topamax. Her episodes were changing and I suspected infantile spasms. I researched and printed out articles from medical journals showing that the diet could successfully be used to treat IS, instead of the first line treatment of ACTH or Prednisone.

With her specialists finally on board, we began the diet inpatient and over the course of 12 days, I stopped breastfeeding, and transitioned her to a 4:1 KetoCal formula. Within two weeks of starting the diet, McKinley was seizure and spasm free. Results that I was grateful for. She started the diet while on Trileptal and Topomax—we weaned Trileptal first. Knowing what I know now, I wish we had also weaned Topomax in those first few months. She responded well to the keto formula—-I was allowed to add a splash of breastmilk to each bottle until my supply was depleted. We also slowly introduced purées.

We enjoyed 10 glorious months of freedom, until her spasms returned. Not as strong as pre-diet, but present nonetheless. We added Vigabatrin and experienced a couple months of freedom, before relentless teething caused the spasms to return earlier this year. While we haven’t been able to regain control yet, I know the diet is still helping her at nearly 20 months of age. We are working on making adjustments that I pray will eventually get her back on track.

McKinley's main source of nutrition are her KetoCal bottles. We are working on increasing her intake of purees, as her genetic disorder affects her ability to learn to eat/chew/hold a spoon, etc. I started introducing purees around 9 months old, but she would barely consume more than one ounce. She was in feeding therapy, but due to covid, we had to stop. This year, we have been able to gradually increase that to two ounces of puree per feeding. I try to feed her puree three times a day, but we've only mastered a solid two feedings daily. For the summer, I'd like to work her up to three ounces in one sitting (baby steps!). 

As far as food, she's had chicken and turkey for protein and olive oil, butter, heavy cream, avocado oil and mayonnaise for fats. Her cholesterol came back high from a recent blood test so I'm avoiding butter and heavy cream for a bit.

Veggie-wise, we're starting to expand. She loves asparagus and she's also had green beans, spinach and avocado consistently. I usually bulk make her purees, but since I've wanted to introduce new veggies, I bought an assortment of HappyBaby puree pouches to try out new flavors and see what she likes before I bulk make. 

So far McKinley's had and loved: 

- Pears, Zucchini, Peas pouch

- Pears, Squash, Blackberries pouch

- Pears, Kale, Spinach pouch

- Apples, Pumpkin, Carrots pouch

I mixed all these pouches with a full avocado and added additional avocado oil to reach her 4:1 ratio. One pouch gives me about (4) 2-ounce jars, so I'm able to freeze and thaw as needed. If it's a new ingredient, I give her the same puree 2-3 times in a row to see if her spasms increase. I actually noticed her spasms go up after consuming the Pears, Squash and Blackberries pouch, so I'll avoid squash and blackberries moving forward. I think using pouches (or pre-made baby jars) are a good way to introduce a new food, before your proceed with bulk cooking.

We've always tested McKinley's ketones using urine test strips (cotton balls in her diaper). She's always tested Larger or Large. I had read that purchasing a blood ketones meter will give you accurate results and then you can determine if a certain level allows for better seizure control. I did buy the blood meter, but haven't tested it out yet.

If I was a time traveler, I would go back in time and tell myself the following:

• Research the diet more aggressively. Read Dr. Kossof’s The Ketogenic and Modified Atkins Diet book. It’s the staple for Johns Hopkins Hospital and gives a crash course on the diet for interested parents. 

• Join keto support groups on Facebook. I would have asked questions about the potential of starting the diet with an infant and how to convince doctors to consider it, when they have little to no experience in it. 

• Research side effects of the diet with McKinley’s medications (at the time). I wish we had realized that Topomax and the diet don’t play nice together and that acidosis is a common result. We would have avoided additional hospital stays had we known from the initiation of the diet.

• If you’re not happy with your current team of specialists and their experience with the diet (or lack of), find a new team. This one may be the hardest when you’re in the thick of it. We all know too well that appointments with new doctors can be time-consuming to obtain, but I think it’s never too late to try. Post-pandemic world, it’s something I will consider as McKinley grows and her needs change.

• Trust your gut. You are your child’s parent. You know and love them more than anyone else. If your gut is saying “try the diet” (or another therapy or medication), follow it. Make the appointments, encourage the doctors, and power through it.

Since time traveling is not feasible, I write this in the hopes of guiding a family through a similar experience. I write this to share our experience, our ups, and our downs, with the keto diet.  If I can empower at least one family to speak up or try something different, then this post will have been worth it.

Troubleshooting Your Keto Diet: Common Mistakes and Solutions

By: Laura Dority MS RD LD

Are you having difficulty achieving adequate ketone levels?  Do you feel like you have put all your blood, sweat and tears into a keto diet but are just still stuck at negative or trace ketone levels? Let’s see if I can help by diving into some of the most common mistakes and mishaps for those on a keto diet.

Roadblock #1: Not Eating Enough Fat

In order for the keto diet to be successful you must eat a high fat – not just low carb diet.  Most experts agree that at least 70% of your calories should come from fat. Fat is an important nutrient in getting your body to produce ketones. So pile on the avocados and olive oil – don’t be afraid.  Fat is key to success! 

Roadblock #2: Eating the Wrong Types of Fat

Avoid processed fats such as vegetable oil blends.  Instead focus on a variety of natural fats including eggs, avocados, raw nuts, seeds, oils and butters.  Don’t forget about ghee, heavy cream, coconut oil and coconut cream as well.  Aim for 4-5 different fat sources throughout the day.

Roadblock #3: Eating the Wrong Amount of Calories

Both eating too many or too few calories can derail your keto diet. Signs of eating too many calories including unintended weight gain, poor ketosis and feeling sluggish. On the other hand if you are losing excessive weight or have poor energy, try increasing your calories slightly.

Roadblock #4: Not Drinking Enough Water

Adults maintaining a keto diet should drink at least 64 ounces of water daily. If you are starting the keto diet, you need even more water because as soon as you start cutting out carbs your body will start to lose water naturally.  Water is crucial to keep your body functioning at its best by circulating nutrients, flushing out toxins and burning fats. Hydration for children is weight dependent so check with your healthcare team about water goals. 

Roadblock #5: Eating Too Much Protein

The keto diet is a high fat, low carb diet – not a high protein diet. Eating too much protein will lead to protein conversion into glucose (sugar) in the body. So if you eat too much protein, your body may not use fat as an energy source. To prevent getting too much protein, focus on fat sources that do not include protein such as butter or oils over just eggs and meat. 

Roadblock #6: Eating Too Many Keto Sweets

Many keto sweets contain large amounts of sugar alcohols and sugar substitutes. These sweets have a lot of calories which may cause you to eat too many calories. In addition, they may increase your cravings for sweet foods. Keep in mind that not all sugar alcohols are created equal. Some sugar alcohols and sugar substitutes are processed like sugar in the body and may need to be counted as carbs.

Roadblock #7: Excessive Snacking

Be sure you are only snacking when you are truly hungry and not due to other factors such as emotions or boredom. If you are hungry and need a snack, nuts seeds, avocados, or cheese are great options. Focus on small portions of these foods and giving yourself enough time after eating to feel satisfied before going back for seconds.

Roadblock #8: Hidden Carbohydrates

There is no official definition for a food to be labeled “low carb.” Many foods carry this claim but are not keto friendly. Common hidden sources of carbs can be found in condiments, sauces and salad dressings. Keep in mind that foods labeled “low sugar “or “sugar free” does not necessarily mean low carb and may not be acceptable on a keto diet. Read labels carefully!

Overall the biggest mistake people make is not drinking enough water and not following the right amount of carbs, proteins and fats.  Remember at least 70% of your total calories should come from fat (often more if you are on a “classic” form of ketogenic diet therapy) 5-10% from carbs and 15-20 % from protein on most keto plans. Reach out for help from a professional before abandoning your keto journey. The best source of nutrition information is a dietitian or doctor that is familiar with keto diets.

Disclosure: Before you make any changes to your ketogenic diet always discuss with your medical team. 

Dairy Free Keto...Is that even a thing?

3/1/20

By Daisy Argudin

My keto kid is allergic to dairy and eggs so we have had to learn to make adjustments to his diet since he was small. It has made keto a bit more challenging for us but also something that made me want to try keto for his epilepsy over 2 years ago. I was used to reading every label and checking ingredients. We rarely ate out as I don’t think a chief in a restaurant can be trusted with so many restrictions. Unlike most keto families we can't pack some cheese for a snack. We can't use cream as our fat with meals. We can't add butter to everything to meet macros. Try and go through your daily food list and see how much of it is dairy. Thankfully in the last 3 years we have begun to see more and more dairy alternatives but often they are high in carbs or taste awful. The last year has brought more keto dairy free options as keto has become a popular way of life.

So how do we do it? Often I'll look for vegan keto recipes and get ideas that I can add protein into and stay within our macros. If I find something I'd like to try that has dairy then we have to find alternatives. I search many sites for new products and I'll ask my local grocery store to carry them or order some for us to try.

So what has worked for us? Dairy free cheese that is keto friendly and good is unfortunately a dream. A cheese stick of a popular brand is 4 net carbs while the shreds are 6 net carbs per ¼ cup, not worth it for us.

Butter seems to be an easy find that tastes great and we like the brands Smart Balance or Earth Balance. The macros are slightly different from dairy based butter. Dairy free butter has 9g of fat while butter has 11g. If you can find Earth Grown Coconut Spread, we find it at Aldi's, it has no carbs and 11g of fat. The flavor has a hint of coconut and is less salty than butter but very good.

Yogurt? We like Kite Hill and Silk. Both are almond based. Silk is very similar to yogurt in texture and taste. Kite Hill is slightly less thick than the silk and a bit more tart, we also use it in place of sour cream. I can add avocado or mct oil to either and it mixes in well without changing the texture or flavor.

Coconut cream, not canned coconut milk, is close to heavy cream consistency but will add a coconut flavor to whatever you are making. Silk makes a heavy whipping cream that is very close in macros and taste to heavy whipping cream. If you want to make your own, you can blend 1 part vegetable oil with 2 parts milk alternative in a blender and it will work for most recipes.

Dairy free milks. We use different ones for different meals. If I want higher protein for say a shake, I like the unsweetened Bolthouse pea protein milk with 1 net carb and 10g protein. For less protein the Ripple unsweetened pea milk with 0.5 net carbs and 8g protein. Silk almond milk has 0.5 net carbs and 1g protein so it fits as a drink with meals. All of these work well to blend in fats as needed to meet macros.

Some families are choosing to reduce their dairy intake over concerns that it is inflammatory to the body and specifically concerns that inflammatory changes in the brain can lower seizure thresholds. Some just want new meal options or are obligated to go dairy free, like us, because of allergies. Whatever your reason for trying dairy free, talk with your team and see if some of these options work for your family.

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All the brands discussed in this article are ones we personally use, my opinions are my own and I am not compensated for using or endorsing them.

The Adventures of MCT Oil

Updated: 2/1/22

By Laura Dority MS RD LD

What is all this fuss about MCT oil? What is it?  When should it be used?  Can it be harmful?  You may have heard a lot about MCT oil and its role in ketogenic diet therapy but you may also have a lot of questions about this product.  As a ketogenic dietitian I use MCT oil all the time.  In fact, I would estimate that at least 50% of my patients consume MCT oil on a daily basis - it is definitely one of my favorite hacks I recommend to patients. So let’s dig in and I’ll give you my opinion on when I use it, what the side effects are, how to identify a quality brand and more.

MCT stands for medium chain triglycerides. Triglycerides are just a fancy word for fat. Fats are made up of chains of carbon atoms and are divided into 3 categories: 

Short chain fatty acids: Fewer than 6 carbon atoms. This type of fat does not occur naturally.

Medium chain fatty acids: Contain 6-12 carbon atoms. Occurs naturally in coconut oil, palm kernel oil and in a small amount butter. 

Long chain fatty acids: More than 12 carbon atoms.

Why is this important? Long chain fatty acids are more complex for our bodies to breakdown due to the longer chain of carbons and therefore more bonds to break. MCTs are easily absorbed and bypass much of the digestion process. Because of this easier digestion, MCTs provide a quick energy source for ketone body production.  There is even some evidence to suggest there is an additional anti-epileptic effect (outside of ketone enhancement), particularly with caprylic acid (C8). For the rest of this article we are going to be primarily discussing the following MCT’s: caprylic acid (C8), capric acid (C10) and lauric acid (C12). 

Coconut Oil vs MCT Oil Supplement

Often times coconut oil and MCT oil are promoted as the same which is not technically true. MCT oils generally contain either 100% caprylic acid (C8), 100% capric acid (C10) or a combination of the two. Lauric acid (C12) on the other hand is the main component in coconut oil. MCT oil supplements rarely contain any of the lauric acid. Why does this matter? That question is actually a widely debated and controversial topic.  I treat MCT oil supplements and coconut oil differently. Coconut oil can be a great way to get some MCT into your keto diet but I won’t say it’s fully comparable to an actual MCT supplement. It certainly is possible that the different MCTs work differently in our bodies. A great thing about coconut oil is it’s very stable at high cooking temperatures. This is NOT the case with MCT oil supplements. 

So to pull this complex topic together- use both! Use coconut oil to cook and bake and use MCT oil has an added supplement to your daily plan to get a variety of MCTs.

When to Use:

Keep in mind that MCT oil is rather versatile and there are many reasons and ways to use this product. Often it helps with diet palatability, decreasing the amount of fat needed from other foods. Likely the most common reason to use MCT oil is for constipation management. Since it’s easily digestible it generally empties through our digestive system quicker than other oils which can combat the constipation side effect we commonly see on a keto diet.

Another reason to use MCT oil is to provide a more energy-efficient ketone producing fuel source. A tablespoon of MCT oil compared to a tablespoon of olive oil (long chain fatty acid) would produce deeper ketosis.

Patients with carnitine deficiency may also benefit from MCT oil supplementation. MCTs do not require carnitine for digestion. Over the past few years I have had a lot of patients that do not tolerate carnitine supplements. By adding a little lamb to naturally boost carnitine levels and using more MCT oil instead of long chain fats you can increase the supply of carnitine and decrease the demand at the same time.

There is also some evidence to support anti-inflammatory, anti-microbial and anti-viral properties of MCT oil but those are hard to measure in a clinic setting so I really focus on constipation, ketone production and carnitine deficiency.

How Do I Incorporate?

First and foremost, reach out to your ketogenic diet team to determine a starting dose and schedule. It may need to be incorporated into your mealtime ratio. 

• Add to beverages 

• Add to food such as low carb yogurt or a smoothie 

• Drizzle over salads 

• Incorporate into fat bombs 

• Take it like a shot

• Mix into a mayo sauce (tuna salad, dip)

Just remember, MCT oil should not be heated. It’s okay to add to hot beverages but you should not cook with it. Also, for best results, spread the MCT oil throughout the day. 

Side Effects: 

The number one side effect with MCT oil is GI discomfort and/or diarrhea. If you do experience some GI discomfort or loose stools, it does not mean you cannot tolerate ANY amount of MCT oil. It probably means you took too much-try a smaller amount and spread throughout the day. I would also advise to start small and increase slowly so your body can adjust to the digestion. This can help minimize side effects. 

Quality Brands:

It’s important to make sure you are purchasing a MCT oil supplement from a reputable company. No one wants to pay top dollar for MCT oil that ends up being a glorified vegetable oil. Remember that supplements are not regulated so you have to buy from a trusted source such as a medical food company or a company that voluntarily has their product tested by a third party. One easy way to find a reputable source is to look for the USP Verified Mark. Seeing the USP Verified Mark on a dietary supplement label indicates the product contains the ingredients listed on the label and the amount stated.

After finding the USP Verified Mark on a product, you also want to make sure the product contains both a combination of caprylic acid (C8) and capric acid (C10). It is not necessarily a requirement that the company tell you if they use both C8 and C10 so you may have to do a little digging. Here is an example label of a good product that has both the USP Verified Mark and provides a nice breakdown of both C8 and C10. Some good OTC brands often used are Now, Nutiva and Nature’s Way Organic.

Another option would be to purchase a MCT oil manufactured by a medical food company such as Liquigen® (manufactured by Nutricia) or BetaQuik® (manufactured by Vitaflo). Not only are these products manufactured by trusted companies, but the products are also emulsified. Emulsified products stay in solution – so you can avoid that separation you commonly see if you mix oil into other foods. 

Insurance Coverage: 

Most insurance companies consider MCT oil a supplement and since it’s readily available over the counter, it’s rare you can get insurance coverage. Clearly this varies widely from state-to-state but I personally have gotten coverage for kids who are fed via g-tube. I also generally have better success getting the emulsified products (Liquigen® and BetaQuik®) covered. Nutricia and Vitaflo who make these products have letters of medical necessity and patient assistance programs on their website that can be very helpful. Some Medicaid plans have oral supplement coverage that would be worth a try. Bottom line –call your insurance company - it never hurts to ask! 

As a recap – MCT oil can be a great addition to keto plans but should be individualized for the patient depending on what the goals are and how much of the product can be tolerated. Remember these are strictly just my opinions and experience with using MCT oil in my own clinical practice. Different ketogenic diet programs may use MCT oil with a different approach. 

Updates:

Recent animal studies suggest that MCT oil as 9% of total caloric intake improved spatial working memory and problem solving skills. (Epilepsy & behavior, 2021-01, Vol 114 (Pt.A) p107608)

A pilot study in healthy older adults showed improvements in working memory, inhibitory processing, problem solving and motor control that approached significance. (Alzheimer’s & dementia, 2021-12, Vol.17 (S6)

A systematic review revealed that MCT does not increase cholesterol, LDL or HDL, but does cause a small increase TG.  (The Journal of nutrition, 2021-10-01, Vol 151 (10), p.2949-2956.)

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Disclaimer: The advice mentioned in this article is my opinion only. You should always check with your medical providers if consuming MCT oil as a part of your ketogenic diet is appropriate for you. In addition to the brands mentioned in this article are strictly my opinion only and I have NOT received any funding to promote these brands.

New Year Resolutions

1/6/20

By Jessica Lee

New year, new you…right?

At this point you’ve probably made (and broken) your new year resolutions at least once.  Don’t worry, we have all been there. Maybe it was to start exercising regularly, go on a spending freeze, or call your parents more often…whatever your resolution of choice, everyone seems to be on a common journey for self-improvement this time of year.  

Every day we wake up and have choices to make. Each of those choices sends you down a different path, sometimes doubling back or intersecting with a previous path. When mistakes are made, we (hopefully) learn from them and don’t revisit that path for some time (if ever).  The important thing is that we keep moving, keep trying. You will make bad choices sometimes and unfortunately that choice can mean the difference between seizure or no seizure, but we want to provide tools and resources to foster the good choices. 

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Many of you wrote back to say you feel lost, confused, overwhelmed, frustrated with all of the information out there about the ketogenic diet. It certainly has reached a peak of popularity in the health and fitness world, not without controversy, meanwhile news outlets are constantly featuring stories about how keto ranks last on the list of recommended diets. 

Personally, I am surprised at the animosity some influencers/physicians/nutritionists have against the diet!  They seem almost angry that anyone would consider keto as an option.  It made me pause for a moment and think “Did I just ruin my kid’s health forever by putting them on this diet for their epilepsy?” And then I remember what it was like before. Hundreds of seizures in a day is nothing that these experts (I am tempted to put that in quotes) have witnessed, and they certainly haven’t witnessed the positive effect from the diet.  I will never regret the diet that saved my daughter’s life.  Instead I hope to learn more about it, find ways to better utilize it, and help further research that we can use to promote the best possible outcomes. 

6 months into her ketogenic diet journey

I would not say that this diet is for everyone with epilepsy or will be successful for everyone that tries it but for those of us who have exhausted traditional Western medicine in search of seizure relief, the ketogenic diet can be a welcome space for a weary traveler.  Don’t let the people who cut you down because of your decision to pursue this diet overcome your will and determination.  Remember that their knowledge of the ketogenic diet is likely colored by what they see on mass media as well, so approach them with grace (and maybe a little re-education).

It is in this mindset that we at Keto Hope Foundation hope to encourage you on your ketogenic journey. This year we will focus on content that is geared toward YOU as a person with epilepsy on the ketogenic diet.  We will continue on this journey with you.

Keto Bars: The Good, the Bad and the Absolutely Not Keto Friendly

11/3/19

By Laura Dority MS RD LD 

Are you crazy confused about which “keto” bars are appropriate for you or your child?  Does it seem that “keto friendly” products are marketed everywhere but when you read the label (and I hope you are reading labels) you are skeptical if the product is truly a good option for keto?  

Don’t worry…YOU ARE NOT ALONE.  

Even as a ketogenic dietitian for almost 10 years I was astounded on how many “keto friendly” bars are out there as I started to do my research for this post.  Then I was even more astounded by how many really are NOT “keto friendly.” I also chuckled at myself for the amazing marketing terms on packages such as “certified keto” and “keto approved.”  Certified by whom?  There is no one regulating the term “keto” on packaging so don’t be lured in by these claims. 

The problem lies with the fact that “keto” is not a standard term -there are no requirements for what this term does or does not mean.  Keto in general certainly means low carb but it does not specify if the product is actually high fat or if the “net carbs” listed are a subtraction of fiber only (generally what we recommend for epilepsy) or fiber, glycerin and/or sugar alcohols (not what we recommend for epilepsy).  

*One caveat to the sugar alcohol rule though is some keto dietitians allow the subtraction of erythritol (one kind of sugar alcohol) so I have noted that when indicated – please check with your keto team on their personal thoughts on erythritol.  

MANY, many “keto friendly” products are actually low carb/low or moderate fat AND high protein.  In some cases a high protein product may be appropriate (such as an extreme athlete) but for the epilepsy population on a keto diet too much protein can potentially kick you out of ketosis or prevent you from reaching therapeutic ketosis.  When evaluating keto products, I look for a product that has at least equal amounts of fat to the combination of protein and net carbs (in other words a 1:1 ratio).  

So check out these top 10 rated “keto bars” from Amazon and my official keto RD approved thoughts! I have included net carbs (total carbohydrates minus fiber) for those of you on modified ketogenic diets and keto ratios for those of you on the “classic” ketogenic diet.  If the product contained erythritol I noted it and how that impacted the ratio.   Remember, prepared snacks such as these bars are a nice treat but should be balanced with a whole food ketogenic diet.

—> Disclaimer-These recommendations are for our ketogenic community but may not be appropriate for every individual. Some of these bars have ingredients such as sugar substitutes that can be a seizure trigger for some, so always review the ingredient list to see if it’s appropriate for you. Happy Snacking!

Rating scale:

*** = At least a 1:1 ratio of fat to protein and net carbs combined and does not contain any controversial ingredients to alter the net carbs (such as erythritol or exogenous ketones)

** = Ratio more than 1:1 but contain erythritol or exogenous ketones

* = Below a 1:1 or poor ingredient selection 

I realize that many of you are following a keto ratio higher than a 1:1 but the reality is with any convenient grab and go bar you are probably going to have to pair with more fat to raise your ratio.  I’m thinking some avocado slices, a swig of MCT oil in your beverage or a shot heavy cream. 

#1: Perfect Keto Bar ***

Nutrition (per bar): 240 calories; 18 grams fat, 2 grams net carbs and 11 grams protein (1.4:1 ratio)    

Pros: 

• Contains sunflower lecithin (source of choline-for more on choline visit https://ods.od.nih.gov/factsheets/Choline-Consumer/)

• Sweetened with Stevia (preferred over sucralose and aspartame)

• Contains MCT oil 

• No sugar alcohols

Cons: 

• Expensive – one of the most pricey bars on the market at $3.99 per bar   

  #2: Quest Bar *

  Nutrition (per bar): 200 calories, 9 grams fat, 7 grams net carbs (4 grams net carbs if you subtract erythritol), 21 grams protein (.3-.4:1 ratio) 

  Pros: 

  ·       One of the more wallet friendly options at $1.78 a bar
  Cons: 

  ·       Sweetened with sucralose 

  ·       Ratio too low due to large amount of protein and low amount of fat   

  #3: Yum Keto Bar **

  Nutrition (per bar): 210 calories, 15 grams fat, 5 grams net carbs (3 grams if subtracting erythritol), 11 grams protein (0.9 -1.1:1 ratio)

  Pros: 

  ·       Sweetened with Stevia (preferred over sucralose or aspartame) 

  ·       Contains MCT oil 

  Cons: 

  ·       Expensive at $3.33 per bar 

  #4: InstaKetones Bar **

  Nutrition (per bar): 140 calories, 8 grams fat, 4 grams net carbs, 15 grams protein (.4:1 ratio)

  Pros: 

  ·       Contains BHB (Exogenous ketone – this means a ketone that is produced outside the body – in theory exogenous ketones will boost your ketosis but this is only a short term effect and should not replace eating a keto diet.  Research is unclear of the role (if any) exogenous ketones can play in the treatment of epilepsy.  I am placing this in the pro section only because I do not think it’s a con but I’m not completely sold that it’s a pro either.  

  ·       Sweetened with monk fruit  

  ·       Slightly cheaper than other bars at $2.50 each

  Cons: 

  ·       The ratio is low.  Maybe this is okay due to the exogenous ketones but it’s hard to say.  This bar may work for some patients.  If someone in my practice asked if they could use it, I would probably allow but would be skeptical and want them to really evaluate their seizure control and ketone levels associated with the timing of adding this product.  

  #5: Stoka Bar **

  Nutrition (per bar): 250 calories, 22 grams fat, 11 grams net carbs (4 grams net carbs if subtracting erythritol), 9 grams protein (1.1-1.7:1 ratio) 

  Pros: 

  ·       Contains sunflower lecithin (source of choline) 

  ·       Sweetened with Stevia (preferred over sucralose or aspartame)

  ·       Slightly cheaper compared to other bars at $2.99

  Cons: 

  ·       Does contain 7 grams of erythritol per bar so this may or may not be allowed depending on if you are subtracting from net carbs.  Even if you are not subtracting the eryritol the ratio is still a 1:1 though so that’s not terrible.  

  #6: KetoSlim Protein Bar *

  Nutrition (per bar): 220 calories, 8 grams fat, 20 grams of net carbs, 21 grams protein (.2:1 ratio) 

  Pros: 

  ·       None – This product claims to have 2 grams of net carbs on the package but that’s only because it’s loaded with maltitol (sugar alcohol) and they are subtracting that amount from the total carbs.  Maltitol should not be subtracted for epilepsy patients on a keto diet. 

  Cons:

  ·       Contains fructose 

  ·       Contains maltitol 

  ·       It contains 5X more carbs and protein than fat.  

#7: Dang Bar ***

Nutrition (per bar): 210 calories, 16 grams fat, 4 grams net carbs and 10 grams protein (1.1:1 ratio) 

Pros: 

·       Plant based (great option and only option I found for anyone on a vegetarian keto plan) 

·       Slightly cheaper than some other thumbs up options at $2.77 each

Cons: 

·       None 

#8: Kiss My Keto Bar **

Nutrition (per bar): 240 calories, 20 grams fat, 6 grams net carbs (4 grams net carbs if you subtract erythritol), 10 grams protein (1.25-1.4:1 ratio) 

Pros: 

·       Sweetened with Stevia and monk fruit extract (preferred over sucralose and aspartame) 

·       Contains coconut oil and MCT oil

Cons:

·       Expensive at $3.50 each 

#9: SlimFast Keto Bar **

Nutrition (per bar): 190 calories, 14 grams fat, 6 grams net carbs (4 grams net carbs if you subtract erythriol), 7 grams protein (1.1-1.27:1 ratio) 

Pros: 

·       Contains MCT oil

·       Sweetened with Stevia (preferred over sucralose or aspartame)

·       Cheaper than most bars at $2.00 each 

Cons: 

·       Packaging slightly misleading as they also subtract glycerin from net carbs which we do not in epilepsy.  

#10: Atkins Bar *

Nutrition (per bar): 190 calories, 9 grams fat, 6 grams net carbs and 15 grams protein (.43:1 ratio) 

Pros: 

·       Contains coconut oil (MCT source) 

·       Low net carbs 

·       Cheapest bar at $1.49 each 

Cons: 

·       Needs more fat to be considered keto

·       Misleading label as they subtract glycerin from net carbs which we do not in epilepsy

·       Sweetened with sucralose 

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 In summary…

If I had to choose my favorite it would be the Perfect Keto Bar.  Why?  I like their ingredients and the fact they do not contain any erythritol so the variable of “is erythritol okay or not” is taken out of the equation.  For anyone on a plant based keto plan, the Dang Bar is a great choice.  Please keep in mind the nutrition information and pricing (Amazon) is accurate as of September 2019.  Also there may be some slight variations in nutrition information based on flavors.  

This post is not sponsored.

ChocZero: Truly Sinfully Healthy

10/20/19

By Laura Dority, RD

If you thought chocolate was a no-no on a keto diet or that you could only have dark chocolate, you are in for a decadent treat with the chocolate line from ChocZero. They make three different products –chocolate squares, Keto Bark and sugar-free syrup.  They do not use any artificial sweeteners or sugar alcohols…a rare find in the keto world.  Shipping is free for orders of $34.99 or more. 

The chocolate squares come in both dark and milk chocolate varieties. They are sweetened with monk fruit and a fiber blend. Each milk chocolate square is 1 gram of net carb (total carbohydrate minus fiber). Each square is 50 calories, 4.5 grams of fat, 4 grams of carbohydrate, 3 grams of fiber, and 0 grams of protein. A package contains 10 chocolates for $4.50. The dark chocolate are available in a 50% and 70% cocoa option.  The 70% option is 45 calories, 4.5 grams fat, 5 grams of total carbohydrate,  4 grams of fiber and 0 grams of protein. They are all approximately a 1:1 keto ratio. 

The second product this company makes is a Keto Bark in either milk or dark chocolate and variety of different flavors including peanut, almond, hazelnut, coconut and peppermint. One bag is $6.99 with 6 1 oz servings per container. Each ounce is 150 calories, 14 grams fat, 11 grams of total carbohydrates, 8 grams of fiber, and 3 grams of protein for about a 2.5:1 ratio. 

The last product is sugar-free syrup. They have a lot of different options and flavors including vanilla, maple pecan, peppermint, blueberry, strawberry, caramel and more. Each bottle is $5.99 to $7.99 and contains 17- 1 Tablespoon servings. Unlike most sugar-free syrups, these products do not contain any artificial sweeteners or sugar alcohols. Instead they contain a liquid vegetable fiber. One tablespoon of the maple vanilla syrup is 32 calories and 15 grams of total carbohydrate with 14 grams of fiber so technically only 1 gram of net carb.  Be cautious of not counting any of this fiber towards your carbohydrate limit. While subtracting a few grams of fiber generally doesn’t cause any issues with ketosis, a large amount of fiber may interfere. Check with your keto team on their thoughts about products with large amounts of fiber. You may be advised that this product is not appropriate for your individualized plan or to subtract only a certain percentage of the fiber. 

Carnitine, Carnitine, Carnitine: Can you get enough from food sources?

9/15/19

by Daisy Argudin (loving mother of an amazing keto kid)

I'd never heard of carnitine till we began the ketogenic diet. Carnitine is an amino acid that is made in the body. L-carnitine helps the body turn fat into energy. The problem is when you are on the keto diet you eat a lot more fat and less protein than the average person. This can create a carnitine deficit as your body cannot make enough to keep up with the supply and demand. Carnitine is something your body needs because if you do not consume enough it can affect your muscles including your heart. 

We were told that Carnitor (a pharmaceutical grade supplement) was the best way to treat my son's carnitine deficiency. Although I had my doubts we followed the recommendation with my son's best interest in mind. A few days after starting the supplement he began having seizures again although we had been seizure-free for months. While trying to figure out what was going on I found several sources that said that seizures were a common side effect of Carnitor. There were other factors around the same time so I can never say that the Carnitor was in fact what brought back his seizures but I have serious mom guilt over it.

More info available at www.americanlamb.com

When the seizures returned I began to seek out alternatives to the Carnitor but was told that there were no food alternatives. While researching I found that lamb has the highest level of naturally occurring carnitine at 45 mg of carnitine per ounce of meat. The carnitine you get from food is much easier for the body to absorb and utilize versus that in the supplement. 

In my own son we were able to raise his carnitine levels to within normal range in 2 months by just adding lamb into his diet.  His free carnitine level was at 16 umol/L. A free carnitine level below 24 is generally considered deficient.  His level improved to 48 umol/L after 2 months of focusing on lamb intake at least 4 times week (each serving being 1.5 oz).  Once I saw this I began to share with other epilepsy parents and many of them have had similar results. One parent reported the free carnitine level going from 14 umol/L to 27 umol/L in less than 2 months. Another parent reported going from 6 umol/L to 30.5 umol/L in 3 months. 

YUM!!!

How much each child will need depends on their own body and the amount of fat they consume compared to how much protein they consume. Lamb can be intimidating to make but we buy it ground at our local grocery store and use it just like hamburger meat. The taste is stronger so some children prefer it mixed with ground beef but it is quite palatable.

Many healthcare providers say that the only way to get the carnitine levels within range is to take the supplement but I myself have seen that food can be a viable option. Try for yourself, consult with your dietitian and make the best choice for your child. But know that there are choices!