Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

Tish and Caroline

My name is Tish and I have a 21-year-old daughter named Caroline. She has a rare neurological disorder called Alternating Hemiplegia of Childhood (AHC), and as with about 50% of kids who have AHC, she also suffers from epilepsy. Caroline has had seizures since birth, but they were pretty well controlled with medications until she hit her teenage years. About 3 years ago, she ended up in the hospital in status epilepticus for over 12 hours. After this event, we decided, with our neurologist, that it was time to try the ketogenic diet.

The ketogenic diet has been incredibly helpful for Caroline. Not only did it help with her seizures, but we noticed increased energy and overall health. Because Caroline is tube-fed, the ketogenic diet is relatively easy to do. Now that we have been doing the diet for a while, I’ve come up with some ways to make it a little easier. I hope that these tips will help make your life a little easier too!

Have Your Tools Handy

Have all the things you need to make your feeds stored in the kitchen by the sink rather than the pantry. You may be giving up valuable storage space but it will take the hassle out of mixing your feeds. I use a deep drawer just by the sink that serves as our “keto drawer”. I keep the KetoCal® 4:1 LQ, all the extra ingredients, gram scale and mixing devices right there.

Pre-make Your Feeds

KetoCal 4:1 LQ mixed in a lidded container with a pour spout

Because my daughter is older, she needs extra protein with the KetoCal®, so we add protein powder, plus MCT oil. I pre-make all my daughter’s feeds the night before and store them in containers in the refrigerator. They are safe to use for 24 hours. I put the mixture in a small lidded container with a pour spout. This makes it easy to take to school or on outings. I just shake them up before pouring them into her feeding bag. I bought the lidded containers at the grocery store. We use 3 per day and I have 6 of them so that I always have a clean set to work with.

Measure Your MCT Oil in a Glass Container

Measuring the MCT oil is a challenge for us. We use a small amount and the MCT oil is hard to clean out of most plastic measuring devices. I like to use a glass shot glass with mL and fluid ounce measurements on it. I bought it at a kitchen store but you can also find them online. (Be sure to check with your dietitian because some families may be asked to measure MCT oil with a gram scale)

Check Off All Your Daily Requirements

When I made my daughter’s feeds, I put everything she needs once daily into her morning feed. So, I put her potassium citrate, powdered multivitamin (we use Phlexy-Vits® by Nutricia) and her daily laxative dose into her morning feed. Just prior to feeding, I add them to the plastic container that I made the night before. This way I am sure she gets everything she needs for the day.

Create Instructions for Other Caregivers

I am usually the one who mixes all food and medicines for my daughter. However, in the event that a caregiver or family member does it in my absence, I have typed, laminated instructions in my “keto drawer” with all of the ingredients and equipment.

I hope that these tips are helpful. If you have a child who is tube-fed and has uncontrolled seizures, I highly recommend that you talk to your neurologist about the ketogenic diet. It has been pretty easy to manage, and for us, it has made a big difference in our daughter’s quality of life.

-Tish

*Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

I was paid by Nutricia for my time writing this post, however, my opinions are my own.

Ketogenic Diet Myths and Misconceptions Series: Heart Disease

myths2

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