Ketogenic Diet Myths and Misconceptions Series: Heart Disease

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One of the most common misconceptions about the ketogenic diet for epilepsy is that it will lead to heart disease, also known as cardiovascular disease. It is true that consuming high amounts of certain types of fats (including cholesterol, saturated fats and trans fats) can lead to high levels of lipids in the blood, which may increase an individual’s risk for developing heart disease. It is also true that high lipid levels are a common side effect of the ketogenic diet. However, when the ketogenic diet is used under proper medical and nutritional supervision, lipid levels can typically be controlled.

When an individual is on a ketogenic diet for epilepsy, their health care team will regularly monitor their blood lipid levels. If high lipid levels are found, adjustments can be made to the diet in order to bring the levels down to a safe level. This is just one of the many reasons why it is so important to only do the ketogenic diet under close medical and nutritional supervision.

A 2008 study from Johns Hopkins Hospital found that about a third of children developed high lipid levels after starting the ketogenic diet[1]. Interestingly, the researchers noted that in many cases, the high lipid levels were only temporary. As the children’s bodies adjusted to the high fat diet, their blood lipid levels often normalized and returned to near pre-diet levels within 6-12 months[2].

As mentioned above, the ketogenic health care team can make certain adjustments to the diet in order to help prevent or manage high lipid levels. For one, the ketogenic dietitian can help caregivers to incorporate more healthy fats into the diet and reduce the intake of unhealthy fats. The Children’s Hospital of Philadelphia (CHOP) published a report in 2009 about six children who developed high lipid levels on the ketogenic diet[3]. The children’s caregivers were encouraged to reduce foods with high levels of saturated fat and cholesterol (such as heavy cream, butter, egg yolks, etc.) and to incorporate more healthy fats into the diet (such as vegetable oils, nuts, etc.). These simple diet adjustments led to improved lipid levels for all six of the children observed.

It’s important to note that high lipid levels may be less of a concern for children on the ketogenic diet who are tube-fed or who otherwise consume a formula-only ketogenic diet. The previously mentioned 2008 Johns Hopkins study found that children on formula-only ketogenic diet were much less likely to develop high lipid levels in comparison to children who consumed a solid food ketogenic diet. This may be because ketogenic diet formulas have relatively low levels of saturated fat (20%) in comparison to the amount of saturated fat in a typical solid-food ketogenic diet (60%).

In summary, the belief that a ketogenic diet for epilepsy will lead to heart disease is a common misconception. Although high lipid levels can increase an individual’s risk for developing heart disease, lipid levels can usually be managed with close monitoring and guidance from the ketogenic diet health care team. As always, be sure to discuss any questions or concerns with your health care provider.

 

  1. Nizamuddin, J., et al., Management and risk factors for dyslipidemia with the ketogenic diet. J Child Neurol, 2008. 23(7): p. 758-61.
  2. Kossoff, E.H., et al., Ketogenic Diets: Treatments for Epilepsies and Other Disorders. Fifth ed. 2011, New York, NY: Demos Medical Publishing.
  3. Fenton, C., C.M. Chee, and A.G.C. Bergqvist, Manipulation of Types of Fats and Cholesterol Intake Can Successfully Improve the Lipid Profile While Maintaining the Efficacy of the Ketogenic Diet. ICAN: Infant, Child, & Adolescent Nutrition, 2009. 1(6): p. 338-341.

Birthday Cakes for Children on the Ketogenic Diet: Part 2

How to Create an Awesome Pretend Birthday Cake for Your Tube-Fed Keto Kid

Last week, we talked about keto-friendly birthday cakes for children on the ketogenic diet. In today’s post, I’ll share some ideas for making non-food, pretend birthday cakes for keto kids who are tube-fed or exclusively formula-fed.

My younger sister, who has epilepsy, has been tube-fed for many years. However, up until a few years ago, she was able to eat some food by mouth and always enjoyed tasting her birthday cake. After she became strictly NPO due to swallowing problems, I worried she would be disappointed by a lack of a birthday cake so I made her this pretend pink and purple princess cake out of cardboard, felt paper, ribbon, tissue paper and glitter paint. I poked little holes in it and inserted candles for her to blow out (you could also use flameless candles for a more fire-safe option). Her favorite part of celebrating her birthday is everyone singing “happy birthday” to her (seriously, the amount of joy she gets from a single song is unparalleled) so she didn’t seem to miss eating cake at all. In fact, I think she loved the foodless cake even more because she could keep it and we could relight the candles and sing over and over again, all year long (she’s really confused about her age now).

To make the pretend cake, I cut two big circles (about 12 inch diameter) out of cardboard to be the top and bottom of the cake, along with one long thin piece of poster board that I wrapped in a circle and taped to be the middle of the cake (the diameter of this circle should be about the same as the two big circles you cut). I taped one of the big circles on top of the wrapped poster board and the other on the bottom.  Then I covered the whole thing with paper mache and let it dry overnight. After it was dry, I covered it with colored felt paper that I cut to match the size of the top of the cake and the sides. Last, I decorated it with different colored ribbon (wrapped around the sides to look like layers), glitter paint, fluff balls, and balled up white tissue paper to look like frosting. I used a glue gun to attach the decorations, but super glue would probably work fine if you don’t have one.

If you are crafty, you can find some awesome sewing patterns and craft tutorials for making more elaborate pretend birthday cakes. We’ve collected some of these on our Pinterest page. Some of the ideas require fairly advanced sewing skills but others are more basic.

Another idea is to make a birthday cake piñata (such as this one) and fill it with non-food treats like stickers, pencils, toy cars, necklaces, etc. You can use it as a pretend cake to sing happy birthday, then use it as a piñata afterwards. Alternatively, you could make a piñata-like box cake made of decorated boxes with gifts inside that your little one can “open”. Here is a great example shared by the FPIES Foundation: cake with gifts inside and cake with gift boxes opened (Note- FPIES is not related to epilepsy or the ketogenic diet but children with this condition also must follow very restricted diets).

If your child is really into a certain theme, you can make a themed pretend birthday cake. Party supply stores and grocery stores usually sell cake topper kits of popular kids’ interests and movies (I found some Frozen and Despicable Me 2-themed options in my local grocery). For a pretend cakes, you can just glue them on. You can choose colors for the pretend cake according to the theme you are doing, then glue the toppers on last.

If you are looking for a fun activity for the party, you could even let each child make their own pretend birthday cake. You could prepare basic white “cakes” out of boxes covered with white paper, then let the kids decorate it with paint, tissue paper, glitter, jewels, etc.

Like we talked about last week, food restrictions don’t have to keep you from throwing your child an awesome birthday party. Creating a fun foodless birthday cake is a great way to make your little one feel special and to celebrate another year and milestone.

-Mallory

Tube-Feeding and the Ketogenic Diet

feeding_tubes_bannerThe ketogenic diet can be much easier to manage when your child is tube-fed since the diet can be given with a special ketogenic formula. In addition, research suggests that an all-liquid ketogenic diet may even be more effective, perhaps because there is less room for errors with measuring foods[1].

Tube-feeding can be given in a variety of ways. Whether given via a bolus, syringe, or feeding pump, the ketogenic diet can easily be given with a feeding tube. Ideally, the feeding schedule should be similar to the way your child was previously fed, just with the new formula.

As usual, the ketogenic diet will be started in the hospital under close medical supervision. You will work with your doctor and dietitian to determine the appropriate ketogenic diet ratio and amount of formula you should give to your child daily. Oftentimes your child will be gradually transitioned from their previous formula to the new ketogenic formula over a period of a few days. While in the hospital for diet initiation, your ketogenic diet health care team will teach you everything you need to know about preparing, administering, and managing your child’s new ketogenic diet when you go home.

KetoCal is a nutritionally-complete ketogenic formula that can be used to provide the ketogenic diet for tube-fed children. It comes in a 3:1 or 4:1 ratio, and as a ready-to-feed liquid or easy-to-prepare powder. KetoCal is milk-based so it may not be appropriate for children who have milk protein allergies. However, your dietitian can put together a modular ketogenic tube-feed with a variety of ingredients that are safe for your child’s food allergies. The KetoCal 4:1 powder and KetoCal 4:1 LQ are both low in lactose, so they are usually okay for children with lactose intolerance.

Tips for Tube-Feeding KetoCal:

  • KetoCal LQ Unflavored is the ideal formula for tube-fed children because it is ready-to-feed. No need to mix! Just shake and administer the formula! In some cases, your child’s dietitian may recommend adding extra water or other ingredients to the formula, so be sure to follow these instructions carefully.
  • If your child is using the KetoCal powder, be sure to mix your formula per the instructions given by your child’s dietitian. For best results, be sure to mix with the correct temperature of water to allow the formula to dissolve fully. It is recommended to use water between 113-122 °F. For more information and tips on mixing KetoCal powder, check out our KetoCal mixing video on YouTube!
  • Once the powdered formula is mixed, store in a closed container in the refrigerator and use within 24 hours. Discard after 24 hours and mix a new batch. Be sure to mix or agitate the formula just prior to feeding since some settling may occur.
  • Once the KetoCal 4:1 LQ has been opened, it can be stored in a closed container in the refrigerator for up to 24 hours.
  • For both the KetoCal Powder and KetoCal LQ, the recommended hang time is 4 hours. The hang time refers to the amount of time the formula can safely remain at room temperature after preparation.
  • Some settling of Ketocal may occur in the feeding bag which is a normal feature of the product. This settling should not block the feeding tube, however, it is recommended that the tube is flushed with water between each feed. It may also help to occasionally agitate the feeding bag.

If you have any questions or concerns, contact your child’s health care team for assistance. For questions about KetoCal, you can also call our Nutrition Services support line at 1-800-365-7354, Option 2.

For assistance with getting insurance reimbursement for KetoCal, contact our Nutricia Product Coverage Navigator program.

-Ellen

[1] Kossoff EH, McGrogan JR, Freeman JM. Benefits of an all-liquid ketogenic diet. Epilepsia. 2004 Sep;45(9):1163.