Traveling On The Ketogenic Diet

We love to travel, so when we started on the ketogenic diet four years ago, I worried that the diet would close off the world to us. We could still go to Colorado and Florida because we had friends and family there with kitchens. There were also stores where we could buy ingredients for his meals and pharmacies if we ran out of medication. But what about the places where we would be on our own?

Our first big trip was almost two weeks in Hawaii. I wasn’t sure how easy it would be to find specific ingredients we would need to make food. I also didn’t know if we could find a room with a kitchen, so we prepared as much food as we could to take it with us. It was our first time traveling with a cooler, so I read through the TSA rules to see where they stood on traveling with ice. I researched coolers to find one that would fit enough food but wouldn’t be too big to carry on the airplane. The week before, we made enough food so that we had meals available for the entire trip. The cooler was heavy, but it allowed us to enjoy our trip without worrying about staying in ketosis.

This year, we went to Panama. At least in Hawaii, there was an ABC Store on every corner. In the remote places we were going to in Panama, that would not be the case. It was also not likely that the closest store would have the specific ingredients we needed. There would also not be a pharmacy to stroll into if we needed a prescription. Again, I hit the internet to read about bringing medication and food internationally. There were no specific restrictions about bringing my son’s food into the country, so we again prepared enough meals to cover the trip plus a few extra days. Even though we were staying in homes with kitchens, making the food ahead of time removed many variables. We also upgraded our cooler to a backpack to make it easier to carry on those long travel days.

Now, traveling on the ketogenic diet feels routine. We prepare the food ahead of time. We know the routine to pack and get through security. And we no longer worry about the world being closed off to us. If we can make keto work in the mountains of Panama, we can pretty much make it work anyway.

If you’re looking to travel on keto, here are a few tips:

  1. Find complete meals you can prepare ahead of time. Ideally, it’s also food that can be frozen, like ice cream, pizza, and pancakes (syrup went in checked baggage). Some restaurants will heat food for you, some won’t. Keep that in mind when you plan the meals.
  2. Make sure everything is frozen. Freeze all of the food for the journey and use the blue ice packs to keep everything cool. Make sure the ice packs are frozen, though, because TSA won’t allow them through if they aren’t.
  3. Keep a letter from your doctor handy. If a situation arises where you may need to explain the diet, a letter from your doctor can come in handy.
  4. Don’t forget utensils. Not every segment of your journey will have access to forks and spoons, so bring some with you. Plastic, disposable utensils are best because washing silverware while traveling is not always possible.
  5. Get to the airport early, just in case. We generally get pulled out of line by TSA when they scan the cooler, so having the extra time creates a more stress-free experience.

My final piece of advice is don’t be afraid to travel. It is a big, amazing world out there with so much to see. The ketogenic diet doesn’t need to prevent you from experiencing it.

If you have any questions about traveling on the ketogenic diet, feel free to leave a comment or send me a note.

The Ketogenic Diet Is A Family Affair

On the morning of New Years Eve, my wife and I got a head start on our healthy new year resolution and went for a run. We left our son sitting on the couch watching his iPad with my mother-in-law sleeping in the next room.

Over the past few months, my son (who is on the ketogenic diet for epilepsy) has been sneaking food, so we took the precaution of hiding any tempting holiday treats on top of the refrigerator. Before we left, I looked my son in the eye and told him that we would be right back and to stay on the couch. He nodded in agreement and nestled comfortably in to the corner with his blanked.

When we returned, he was still on the couch. When I asked him, he confirmed that he hadn’t moved but he wouldn’t look at me when he answered. I glanced in to the kitchen and noticed that the step stool that we have under the counter had been moved. On top of the fridge, I could see empty containers of leftover deserts.

I looked back at my son and his head was down. “It was me, ” he said softly.

There has been a lot of this lately. He’ll sneak crackers from the pantry or leftover spaghetti from the fridge. A few weeks ago, he took a bite out of a tomato at a grocery store.

epilepsy dad ketogenic diet seizures

I am both heartbroken and frustrated. I’m heartbroken because of how restrictive the diet is for a 9-year old boy who sees the people around him eating whatever they want. As his father, I’m frustrated because his initial instinct is to lie and the foundation of our family is built on love and honesty. But I’m also frustrated because I know I have a hand in making the environment tempting for him by keeping unhealthy food in the house when the stakes are so high. Where a typical kid would just get an upset stomach from eating too many cookies, my son falls out of ketosis which could lead to an increase in seizures.

He’s been on the diet for more than 3 years. That’s a long time, and these recent incidents of sneaking food are starting to grind down my resolve. I’ve gone from thinking that the diet partly helped saved my son’s life to questioning whether it helped at all or if he still needs to be on it with his new medications and his VNS. I’m collecting evidence to support my theory but deep down I know it’s tainted with confirmation bias because I don’t want the diet to be working.

I want there to be an easy way out. It’s would be easier if there were a clear indicator that the diet was making a difference. It would be easier to stop the diet to remove the strain we are feeling instead of figuring out what other modifications we can do to make the diet more tolerable. But like so many things that come with an epilepsy diagnosis, it’s not that easy. It’s also not easy as a parent to feel like your child is missing out on something when his life is already so hard.

But there are things we can do to not make it harder. We can make better dietary choices ourselves and not have the tempting food in the house. We can make a big deal out of eating better and stressing the importance of diet for our health, the same way his diet is important to his health. We can be his parents, and take on some of the burden ourselves to alleviate some of his. Because if we can’t make it all go away, we should at least show that we are in it together.

No Free Lunch

Early one morning, I was sitting in the living room writing when I heard my son leave his room and go in to the bathroom. He was in there longer than usual and I could hear the muffled sound of banging. After a few more minutes, he came out of the bathroom and I asked what had happened. He explained that he was washing the bucket we had given him the night before when he told us he had an upset stomach. He had thrown up in the middle of the night.

This wasn’t the first time this had happened. My son has been on the ketogenic diet for more than two years. The “keto” diet is a high-fat diet used to treat hard to control epilepsy and it’s hard on his stomach. In addition to his seizure medication, the diet forces him to also take vitamin supplements and medicine for reflux, constipation, and acidosis. Constipation, diarrhea, cramping, and vomiting have been frequent visitors since my son was on the diet.

It’s not only hard on his body, it’s hard mentally, too. He can’t eat what we do or, if he does, he has to have a shot of oil or some other fat on the side. And he generally can’t have more of any one thing without adding more oil. He can’t have a slice of pizza. He can’t have a bowl of cereal or a bag of chips. When he’s at a birthday party, he can’t have a piece of cake or candy. We make modifications, like bringing along a “keto cupcake”, but it’s not the same. Because he is who he is, he endures with little complaint.

We make a handful of meals that he likes where the fat is hidden in the recipe. A soy flour and mayonnaise crust for pizza is one of his favorites. With that, there is fat in the crust and oil mixed in with the tomato sauce so he doesn’t need to have oil on the side. But we don’t have many of those meals, so we’ve been repeating the ones we do have for months.

To add dietary variety, the doctors want him to eat more “real” food. But for that we need a source of fat, which is generally a oil. And that’s what we did for dinner the night before that led to the bucket and the early morning cleanup.

We’ve lowered his ratio over the last year so that he needs less fat, but his diet is still more fat than not. I want to get him off the diet completely, but the doctors say it is working. It’s not enough to stop his seizures, but they think it’s helping his overall brain function and raising his seizure threshold higher than it would be off the diet. I’m less convinced, but I’m also the one that sees how hard the diet is for him every day. And there are certain rights of passage with food that I went through as a child. Eating an entire box of Lucky Charms. Folding a real piece of pizza in half and devouring it. Trying things at the farmer’s market. He’s missing out on all of it.

There is an acronym I remember from my economics classes that was also used in the Robert A. Heineken story The Moon Is A Harsh Mistress. TANSTAAFL, or “there ain’t no such thing as a free lunch,” is the idea that you can’t get something for nothing.

When we started the diet, we saw it as an alternative to more seizure medicine. It was supposed to be the prescription that helped his seizures without the side effects. It was supposed to give him a better quality of life. Maybe compared to another pharmaceutical, it did. But it didn’t come without its own downside.

Because everything comes at a price.