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.

NEW KetoCal Connect Program to Support Keto Parents & Caregivers!

KetoCal_Connect_logoThe KetoCal® Team spoke with several keto parents to ask- What information and resources would have been helpful for you when your child started the ketogenic diet? Based on that feedback, we created the KetoCal Connect Program. The goal of KetoCal Connect is to help patients start and stay on the ketogenic diet successfully by providing caregivers with the information, support, and resources they need to manage the diet at home*.

There are 4 pillars of the KetoCal Connect program:

  1. Trusted products

We want you to have access to our trusted products from day 1 of your ketogenic diet journey. KetoCal has been used by healthcare providers all over the world for over 16 years. If you or your child is going to start the ketogenic diet or has recently started, ask your healthcare provider for a free sample of KetoCal or Liquigen® and a KetoCal Connect New Patient Starter Kit.

  1. Coverage & Cost Assistance

Our goal is to make sure that everyone who needs KetoCal has access to it. Our team of coverage specialists is available to help walk you through the process of getting KetoCal covered by your insurance, WIC, or Medicaid. When these are not options, the KetoCal Assistance Program (KAP) is available for qualifying families to purchase KetoCal at a discounted price.

  1. Caregiver Support

Remember, you are not alone – there’s a whole community behind you. Let us help you connect to nutrition experts and keto families just like you. Get one-on-one help with KetoCal or Liquigen questions by calling one of our Nutrition Specialists at 1-800-365-7354, Option 2. For everyday tips, check out our caregiver support blog. Visit our social media pages to stay up-to-date with KetoCal and to connect with other keto families just like you!

  1. Tasty Ketogenic Recipes

We know how important it is to find ketogenic variations of your child’s favorite foods (and that favorite foods can change overnight!). Check out our recipe database to find a variety of sweet and savory ketogenic recipe ideas that can be adapted according to your child’s specific nutritional needs.

Learn more about the KetoCal Connect program and get support at your fingertips by visiting www.MyKetoCal.com/KetoCalConnect.

*Please note, KetoCal must be used under the supervision of a healthcare provider. KetoCal Connect was created to help support caregivers and is not intended to replace the supervision and guidance of a medical professional.

-Mallory Eastman
The KetoCal Team
Nutricia North America

The Benefits of Using KetoCal® 4:1 Once Per Day

KetoCal 4-1 productsThe ketogenic diet can help manage seizures in patients with refractory epilepsy. In fact, research shows that just over half of children on the ketogenic diet will have 50% or more improvement in seizures, about 1/3 of children will have over 90% improvement in seizures and about 10-15% will become seizure-free. While it can be helpful with seizure management, being on the ketogenic diet can be challenging at times. In today’s blog post, I will tell you a little about how KetoCal can be a helpful addition to the ketogenic diet.

Everyday Convenience

If you have a child on the ketogenic diet, I don’t have to tell you that it can be challenging to plan for keto meals or snacks while running errands, traveling, or going to after-school activities. Using KetoCal once per day can help provide everyday convenience when you are on-the-go. KetoCal® LQ is ready-to-drink and provides a simple and nutritious solution for busy schedules. It also tastes great! (Request a sample to taste it for yourself!)

Nutritional Reassurance

As a busy mom and dietitian, I know a little about the struggle to find meals and snacks that are easy AND nutritious. KetoCal was designed to be both! Using KetoCal® 4:1 once per day is not only convenient, but can also help fill nutrient gaps in the ketogenic diet. Unlike heavy cream (a popular milk substitute with the ketogenic diet)*, one serving of KetoCal 4:1 (356 calories) provides:

  • An excellent source of calcium and vitamin D, two nutrients that are important for bone health
  • Fiber to promote gut health
  • DHA, an Omega-3 fatty acid that plays a role in brain and eye health
  • 4 times LESS saturated fat when compared to heavy cream!

There are multiple ways to incorporate KetoCal 4:1 into your daily routine. You can drink it once per day or use it in everyday recipes. KetoCal 4:1 is available as a powder (great for baking!) or as a ready-to-drink liquid (convenient while on-the-go). Work with your dietitian or visit www.myketoplanner.com to find tasty recipes using KetoCal 4:1.

Ellen Avery, MS, RD
Medical Advisor, Ketogenics
Nutricia North America

KetoCal is a medical food for use under medical supervision.

*Comparing an equal amount of calories from heavy cream.