epilepsy

KetoCal® Air Travel Tips

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Traveling-with-KetoCalTraveling for the holidays? We want to make sure you have no trouble taking your KetoCal with you. Here are some tips for air travel with KetoCal:

Ship it ahead of time:

When possible, many families prefer to ship KetoCal to their destination ahead of time. When you purchase KetoCal from Nutricia, shipping is free for orders over $25. You can order by calling 1-800-365-7354. We recommend that you order a week or so in advance so that you don’t have to worry about whether or not your formula will get there in time for your arrival. Be sure to ask your family/friends/hotel staff to store the KetoCal indoors at room temperature (it should not be stored outdoors in cold weather).

Flying with KetoCal:

Medical Necessity Letter: When flying with KetoCal, we recommend that you get a letter from your doctor or dietitian explaining that KetoCal is a medically necessary formula used with the medical ketogenic diet for the management of epilepsy/Glut1DS/PDHD. You may not need it, but it never hurts to have it in case you have any trouble getting your KetoCal through security.

Checked Luggage: If you are packing KetoCal in your checked luggage, it might be useful to include the medical necessity letter in your bag in case it gets searched by the Transportation Security Administration (TSA).

Carry-On Bags: If you are bringing KetoCal in your carry-on bag, be prepared for some additional screening and give yourself extra time so that you aren’t stressed about missing your flight. Be sure to pack a little extra formula in case of flight delays, which are fairly common during peak travel days around the holidays.

As you likely know, there are limits to the quantity of liquids you can carry on when flying (3.4 fluid ounces or 100 milliliters). Luckily, formulas and medically necessary liquids are exempt from this quantity limit, although they require extra screening. As soon as you arrive at security, notify the TSA agent that you are traveling with medically necessary liquid formula. Have the medical necessity letter from your healthcare provider handy in case you need it. If you do not want the formula to go through an X-ray or to be opened, notify the TSA officer. You will have to go through additional screening in this case, so be sure to give yourself extra time.

Powders may also require additional screening at TSA checkpoints. When you arrive at security, notify the TSA officer that you are traveling with medically necessary powdered formula. Have the medical necessity letter from your healthcare provider handy in case you need it.

  • Ice packs: Ice packs, freezer packs, gel packs, and other accessories used to keep your formula cool are allowed through security as long as they are frozen or partially frozen. Like formula, they may require additional screening.

For more information, check out the TSA guidelines for travel with medications, including liquids, and for travel with children, including formula.

Happy Holidays and Safe Travels!

–Mallory

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

The medical ketogenic diet for epilepsy should be used under medical supervision.

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Keto-friendly Thanksgiving & Holiday Recipes

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Important: Please note that this post was written prior to COVID-19. Please be sure to keep current safety recommendations (like social distancing, mask-wearing, and hand washing) in mind. For more information on how to protect your family from COVID-19, read this post.

Thanksgiving and holiday meals tend to be food-focused. This can be stressful when you or a loved one is on the medical ketogenic diet for the dietary management of intractable epilepsy. However, with KetoCal® and a little extra planning (okay, maybe a lot), you can put together a delicious and keto-friendly holiday feast. Reach out to your ketogenic dietitian far in advance for help putting together a meal that meets your calorie and ratio requirements. Here are some delicious and keto-friendly recipe ideas to get you started.

For Hanukkah recipe Ideas, see our previous post here.

Main Course:

Every family has their own traditions when it comes to main courses for holiday dinners.  Whether ham, beef, poultry or fish is served, be mindful of rubs or glazes that may contain carbohydrates.  You can use  butter or a high-fat sauce to even out the ketogenic ratio. For example, you could create a creamy gravy using heavy cream or Liquigen® (emulsified MCT oil), mixed with chicken or beef bouillon granules.

Most families serve turkey on Thanksgiving. If possible, opt for dark meat since it has a higher fat content.  If you’re up for something a little different, consider these turkey dishes that are already in a 3:1 ketogenic ratio:

Side Dishes:

For many, side dishes are the best part of the meal! Here are some tasty and keto-friendly options:

Chef Rachel’s Stuffing (3:1 recipe, 4:1 recipe)

Chef Rachel’s Green Bean Casserole (3:1 recipe, 4:1 recipe)

Chef Rachel’s Mashed Fauxtatoes (3:1 recipe, 4:1 recipe)

Chef Rachel’s Sweet Fauxtatoes (3:1 recipe, 4:1 recipe)

Cauliflower & Cheese (3:1 recipe, 4:1 recipe)

Dessert & Treats:

Who could forget the sweetest part? Whether you’re looking for a keto-friendly dessert for your holiday feast or holiday cookies to decorate, we’ve got you covered.

Crustless Pumpkin Pie (3:1 recipe)

Chef Rachel’s Apple Crisp (3:1 recipe, 4:1 recipe)

Basic Cookies (great for decorating with food coloring or “keto sprinkles” (granulated stevia with food coloring)) – (3:1 recipe, 4:1 recipe)

Gingerbread Cookies (3:1 recipe)

Chef Rachel’s Chocolate Chip Cookie (3:1 ratio)

Crème Brulee (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Ice-cream (3:1 recipe, 4:1 recipe, MAD recipe)

Vanilla Ice-cream (3:1 recipe, 4:1 recipe)

Chocolate Cupcakes with Chocolate Frosting (3:1 recipe)

Vanilla Cake Pops (3:1 recipe)

Chocolate Cake Pops (3:1 recipe)

Strawberry Panna Cotta (3:1 recipe, 4:1 recipe, MAD recipe)

Chocolate Candy (2.87:1 recipe)

Chef Rachel’s Easy Chocolate Pudding (3:1 recipe)

For more tips on managing the holidays on the ketogenic diet, see our previous post here.

From all of us at KetoCal, we wish your family a very happy, healthy and tasty holiday season!

–Mallory

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

The medical ketogenic diet for epilepsy should be used under medical supervision.

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Ella’s Journey with Dravet Syndrome and the Ketogenic Diet

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Ella on the way to an appointment with her ketogenic dietitian

Ella is 9 years old. She has an orange belt in tae kwon do and is very excited to be going to a new school for 3rd grade. The best way I can describe my daughter is that I wish everyone had the same approach to life and towards others as she does. She is optimistic, kind, and compassionate to anyone she meets. One would not expect such a positive or loving disposition from a child who has been through so much in such a short time.

Dravet Syndrome

We assumed Ella was healthy when she was born a hefty 8lbs 15ozs. She was very curious and social as an infant. Ella was around 10 months old when we realized something was very wrong. She had her first seizure during a nap. It lasted over 2 hours and required her to be intubated for 2 days. We were told it was due to high fever, and were convinced it was the last one she would ever have until she started having them several times a week. She had been intubated 4 times before we knew what we were dealing with. Ella was diagnosed with a genetic condition called Dravet Syndrome at 3 years old. It is a rare and catastrophic form of epilepsy that brings with it a host of medical complications ranging from global delays to chronic infection. It never goes away and it does not always improve over time.

The Ketogenic Diet

Ella had been prescribed several anti-epileptics with little to no noticeable seizure control. She was often in a drug-induced fog or extremely irritable. Her neurologist recommended we put her on the ketogenic diet.

The decision to place Ella on such a restrictive diet was not one that was taken lightly. After researching it, we at first felt overwhelmed and reluctant to try it because of the potential adverse effects involved (the most common problems are digestive issues, although these can usually be managed under the care of a keto dietitian). We also knew that managing the ketogenic diet would be a time commitment, and we struggled with the idea that Ella would not be able to eat food other children could eat. I remember wondering how I was going to keep up with it. I worked full time and had Ella and her younger sister. There were a lot of factors delaying us (my husband and I) from making the choice. However, we decided that we had more to gain by trying it. We knew that if it did not work, we could take Ella off of it and try something else. Fortunately, we met several families who had their children with Dravet Syndrome on the ketogenic diet who were experiencing fewer seizures. They shared their stories with us and it put us at ease.

Following a brief admission to the hospital in order to safely wean Ella onto the ketogenic diet, her dietitian sent us home with several recipes. Ella’s keto dietitian encouraged us to try KetoCal® products to help us find some meal alternatives. KetoCal offered several tasty options for kids such as ready-made shakes (plain or vanilla) and powder mixes that could be used in sweet or savory meals.

After 4 days of being on the keto diet, Ella used the bathroom on her own for the first time. Her speech and cognition improved dramatically, and more importantly she went 6 months without a seizure. It was the longest she had gone without one since 10 months old.

My daughter has been on the ketogenic diet for 5 and half years. Part of why keto has worked for Ella is that we make her a part of the process by empowering her as much as possible. We create new recipes often, based on her requests. This gives her a sense of control over what she eats. Seeing Ella smile after she tastes something new is a huge pay off.

Advice for Other Parents

If you have a child with Dravet Syndrome or intractable epilepsy, please consider the ketogenic diet as a low side-effect option for managing seizures. The diet may not be right for everyone, but it works wonders for so many with uncontrolled seizures. Please do not hesitate to speak with your neurologist about having a consultation with a keto dietitian, or even reaching out to members of the epilepsy and ketogenic diet community. There are many groups on Facebook where you can connect with other families who have tried the ketogenic diet, such as:

You can also find a ketogenic diet provider near you here: https://myketocal.com/kdcenters.aspx.

-Dana

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

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

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.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

Interested in sharing you or your child’s ketogenic diet story? Email us at MyKetoCal@nutricia.com.

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