tips for ketogenic diet for epilepsy

Keto Parents’ Advice for Families New to the Ketogenic Diet for Epilepsy

tips for ketogenic diet for epilepsyIs your family new to the ketogenic diet for the management of intractable epilepsy? If so, you may be looking for tips and suggestions to help you manage day-to-day. Oftentimes, the best advice comes from others who have been in your shoes. Using our social media accounts, we asked keto parents about what advice they would offer other families new to the ketogenic diet. Here is what they said*.

“Patience is key. So is persistence. It took 10 weeks of fine-tuning the diet ratio to completely stop our son’s seizures.”

“Simplicity! Don’t overwhelm yourself with a ton of recipes. Or recipes at all for that matter. Start with a few things while becoming familiar and expand as you feel comfortable. My son ate the same things nearly every day. Also, if you reach seizure freedom and it’s interrupted, don’t get discouraged!!! It’s the worst feeling ever but try to stay positive! My son started the diet at 3 and was on it for 2 years. He’s 15 now and seizure free.”

“Take your time, do your research, ask all the questions! This is a lifestyle not a quick fix. But it is totally worth every second 👌👌 My twins have been seizure free for over a year! Make it simple & as time goes on it gets easier! ♥♥♥”

“Don’t give up…work with dietitian and neurology to fine tune! I believe it works but one needs to be patient and work with your whole team!”

“It’s not as hard as you think”

“Take a deep breath, smile and buy a scale!!!!!”

“One step at a time.”

“Keep it simple, ask for help, be patient 💜💜”

“Go slow it’s a marathon not a sprint.”

“Never give up. Weigh and measure precisely.”

“Go to a place that has a keto clinic with a specially-trained dietitian and neurologist.”

For more tips on managing the ketogenic diet, check out these blog posts:
A Ketogenic Dietitian’s Tips for Families Getting Ready to Start the Ketogenic Diet
Time Management Tips for Keto Moms and Dads
Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

-Mallory

*Results with the ketogenic diet for the management of epilepsy may vary. Talk to your healthcare professional.

The ketogenic diet for the management of intractable epilepsy should be used under medical supervision

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.

 

 

KetoCal® Air Travel Tips

Traveling for the holidays? We want to make sure you have no trouble taking your KetoCal with you. Here are some tips for air travel with KetoCal:

Ship it ahead of time:

When possible, many families prefer to ship KetoCal to their destination ahead of time. When you purchase KetoCal from Nutricia, shipping is free for orders over $25. You can order by calling 1-800-365-7354. We recommend that you order a week or so in advance so that you don’t have to worry about whether or not your formula will get there in time for your arrival. Be sure to ask your family/friends/hotel staff to store the KetoCal indoors at room temperature (it should not be stored outdoors in cold weather).

Flying with KetoCal:

Medical Necessity Letter: When flying with KetoCal, we recommend that you get a letter from your doctor or dietitian explaining that KetoCal is a medically necessary formula used with the ketogenic diet for the management of epilepsy/Glut1DS/PDHD. You may not need it, but it never hurts to have it in case you have any trouble getting your KetoCal through security.

Checked Luggage: If you are packing KetoCal in your checked luggage, it might be useful to include the medical necessity letter in your bag in case it gets searched by the Transportation Security Administration (TSA).

Carry-On Bags: If you are bringing KetoCal in your carry-on bag, be prepared for some additional screening and give yourself extra time so that you aren’t stressed about missing your flight. Be sure to pack a little extra formula in case of flight delays, which are fairly common during peak travel days around the holidays.

As you likely know, there are limits to the quantity of liquids you can carry on when flying (3.4 fluid ounces or 100 milliliters). Luckily, formulas and medically necessary liquids are exempt from this quantity limit, although they require extra screening. As soon as you arrive at security, notify the TSA agent that you are traveling with medically necessary liquid formula. Have the medical necessity letter from your healthcare provider handy in case you need it. If you do not want the formula to go through an X-ray or to be opened, notify the TSA officer. You will have to go through additional screening in this case, so be sure to give yourself extra time.

Powders may also require additional screening at TSA checkpoints. When you arrive at security, notify the TSA officer that you are traveling with medically necessary powdered formula. Have the medical necessity letter from your healthcare provider handy in case you need it.

  • Ice packs: Ice packs, freezer packs, gel packs, and other accessories used to keep your formula cool are allowed through security as long as they are frozen or partially frozen. Like formula, they may require additional screening.

For more information, check out the TSA guidelines for travel with medications, including liquids, and for travel with children, including formula.

Happy Holidays and Safe Travels!

Mallory

 

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.