ketogenic diet

Back to School Tips for Families on the Medical Ketogenic Diet

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As your children head back to school, we hope you can use these tips by ketogenic dietitian Lindsey Thompson, MS, RD, CSP, LD. Thanks, Lindsey!

Starting the new school year can be a mix of emotions from both excitement to apprehension, especially for families with a child on the medical ketogenic diet. Here are some tips to help get you through these upcoming weeks as school approaches.

Meet with the teacher and staff at the school

It is important, particularly if your child will be at a new school this year, to make sure all of the staff members who are in contact with your child are aware of his or her special diet and restrictions. If your child has an Individualized Education Program (IEP), you likely already have a meeting scheduled. Be sure to discuss:

  • Dietary restrictions- Many parents I have worked with find it helpful to compare the medical ketogenic diet to a food allergy (“my son has an allergy to carbohydrates or sugar”). Although this is an oversimplification of the diet, sometimes using the comparison helps staff understand the scope of the medical ketogenic diet when applied to epilepsy management.
  • Classroom items to avoid – In addition to the dietary restrictions, make sure staff are aware that classroom items containing carbohydrates could be harmful for a child on the medical ketogenic diet to use (for example, modeling clay/play dough, which contains flour). I tell classroom staff that when in doubt, have the child wear gloves when using a product in question.
  • Parties & Special Events – It is also important to review with the teacher the schedule of class parties or events that may contain food. Have the teacher let you know in advance when there will be a party or food so that you can send an appropriate ketogenic alternative for your child.

Ease into the school routine

Switching from the summer schedule to school schedule can be stressful. Kids with epilepsy may especially need additional time to adjust their sleep schedules in preparation for school. Practice your family’s school routine a few weeks in advance, perhaps in preparation for a day at the zoo or another activity. Set the alarms, have your children get up and ready, and pack that keto lunch for your child. You may even practice getting to the bus stop or driving to school to estimate the correct time needed. Practicing beforehand will make the first day of school go more smoothly.

Meal prep

As any keto parent knows, meal prepping for the medical ketogenic diet is very time consuming. Schedule a day or time to prepare ketogenic meals and snacks for school ahead of time. Many parents like to choose a day when a spouse or other caregiver is available to help keep the kids occupied, like a weekend day.

Try to keep school lunches simple. If your child likes to drink KetoCal®, your school can provide a serving of KetoCal for the same cost as a school lunch, which may save you time in having to meal prep. See this link for more information about the KetoCal and National School Lunch Program: https://www.myketocal.com/schoollunch/.

Helpful supplies for school lunches

Supplies that are helpful for preparing medical ketogenic diet lunches include:

  • An insulated lunch bag with an ice pack (to keep cream and other fats cold)
  • Small containers for holding the smaller portions of food required on the medical ketogenic diet
  • Some families like a bento-style lunch box and kids find that can be fun as well

Having a child on the medical ketogenic diet is a lot of work and preparation, but it is worth the effort. All of you keto parents and caregivers are doing great! I hope these tips will help ease you and your child on the medical ketogenic diet into a safe and happy school year!

-Lindsey

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

KetoCal is a trademark of SHS International LTD.

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

 

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

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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.

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NEW KetoCal Connect Program to Support Keto Parents & Caregivers!

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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

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