Tips for Caregivers of Tube-fed Children & Adults on the Medical 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 medical ketogenic diet.

The medical 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 medical 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 medical 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.

KetoCal is a medical food for the management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider about whether KetoCal is right for you.

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.

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.