Around The World

I’ve always loved to travel. I lived in Germany when I was in the Army and I traveled to Japan and China in my single days. My wife and I honeymooned in Fiji and Australia. Almost as soon as we stepped foot back on American soil, I began looking for jobs in Sydney and Melbourne.

When my son was younger, he took French classes and we planned to start with Montreal before exploring France and then, ultimately, starting a second career working in kitchens across Europe as a chef.

Our move from Colorado to Philadelphia was part of that adventure. We left the relative safety of the whitewashed suburbs and moved to a diverse, gritty city and everything that brings with it. But as soon as we landed, my son started having seizures.

In a way, I’m grateful for the timing because we are within ten minutes of one of the top children’s hospitals in the country. The people in that building saved my son’s life and continue to care for him. But now I feel tethered to that place. If we go too far away for too long, his seizures snap us back, sometimes violently, into their care.

The daily seizures, the weekly doctor and therapy appointments, and the monthly medication refills make it impractical to look too far outside of our little bubble in the city. There isn’t a way to accommodate my son’s needs while chasing the dream of a life unbounded.

But I’m not resentful. As much as that might have been the life I wanted, this is the life I have. I wouldn’t trade that life for the moments I’ve had and the lessons I’ve learned in this one.

The dream of living in another part of the world seems so far away. But the reality is that we are exactly where we need to be.

Wherever We Go, There They Are

Whenever we go to a new place, in the back of my mind I want that place to change my life. It seems like a tall order, which may be why it hasn’t happened yet. I want to go to a place and be so inspired that I start writing that book that I’ve been thinking about. I want to leave a place a better person, having a better relationship with the people in my life. But mostly, I want to go to a place where my son doesn’t have any seizures.

My son didn’t show any signs of having epilepsy until we moved to Philadelphia. I was only partially joking with the doctors when I asked them if it could be Philly causing his seizures. The first time we went back to Colorado, I was ready to move back if he was seizure-free during the trip. But he wasn’t. I had the same thought when we visited Florida. Maybe Colorado was at too high of an elevation and he needed an ocean breeze. But he had seizures in Florida, too. And in New York. And in California. Wherever we went, there they were.

Even so, when I stepped off the plane in Hawaii, I had that same thought. That maybe this was going to be the place where my son would be seizure-free. If it was going to be any place, Hawaii wouldn’t be terrible. Before we even picked up our bags, I convinced myself we could make it work. I could find a job, even if it meant working remotely. I was sure the children’s hospitals would be fine, and we could make regular trips back to the mainland for care. But we wouldn’t need to, because he wouldn’t be having seizures. It was the perfect plan. Until it wasn’t.

In our first early morning in paradise, the sound worse than every other sound filled the hotel room. His seizures had found us. Across the continent, across the ocean, to an island in the middle of the Pacific. In a place we’ve never been before, hidden from the world. Wherever we go, there they are.

In a way, I was grateful that the seizure came quickly because it lifted the pressure that I had put on our vacation. The longer I carry that pressure, the less present I am and the more I miss of our life. But instead of worrying about that seizure around the corner, it had already come.

It was freeing.

It allowed me to focus on having an amazing vacation with my family in spite of our stowaway. It allowed me to be present and to be grateful for the moments that we have. I saw the beauty of the island. I saw the smile on my son’s face. It reminded me that it’s not a destination that is going to change my life. It’s that feeling that I get when I see his smile that makes my life better every day.

epilepsy dad wherever we go

Traveling With The Ketogenic Diet

My son has always been a good traveler. When we lived in Colorado, we would visit our families in Florida and California, flying across the country a few times a year. When my son was old enough to have his own seat, he decided to take mine at the window, relegating me to the middle seat. After nearly every flight, he tells me that I can have the window seat “next time”, only to change his mind when we get in line to board the next plane.

epilepsy dad traveling keto ketogenic diet epilepsy

As good a traveler as he is, it’s still stressful traveling with a child. Getting out of the house, to the airport, through security, and seated on the plane without forgetting a toy or a favorite blanket (or a child) can be a daunting task, no matter how well we prepare the night or the week before. Those people who travel with more than one child should automatically earn a merit badge. That’s a level of legendary coordination, preparation, and timing that I’ve only read about in books and saw scratched on the back of a stall door in the airport restroom.

 

The more we traveled, though, the more the experience went from a general feeling of panic to more of a controlled chaos. We figured out what preparations we could do the night before and how early we wanted to be at the airport so that there was no praying that we are able to drop our bags off in time or pushing a stroller in full sprint to the gate. Worst case, we make it through security with enough time to hit the restroom before boarding the plane. Best case, we can also grab a lunch and a magazine for the plane. Usually, we wind up somewhere in between, which as far as traveling with children is concerned is pretty much the sweet spot.

epilepsy dad traveling keto ketogenic diet epilepsy

This year, another variable was added to complicate our travel, and that was the ketogenic diet for our son’s epilepsy. The ketogenic (or keto) diet is a high-fat, low carb diet that has been shown to have positive benefits for kids with difficult-to-control seizures.  The diet requires a specific fat-to-everything-else ratio, and each ingredient must be measured to a tenth of a gram. The sources of fat for the diet are butter, mayonnaise, or oil, each of which present challenges when traveling by plane. For example, mayo and butter are both perishable and need to be refrigerated. Mayonnaise and oil are liquids according to the TSA and fall under the 3 ounce rule.

Our son, as well as many other “keto kids”, prefers to take his fat as an oil chaser with his meal. This allows him to eat “normal” food without having to incorporate butter or mayo in everything, but of the three sources of fat, oil is the one least likely to be found inside an airport terminal. We may be able to find a packet of mayonnaise or a pat of butter in a sandwich shop, but any oil that we find will be suspect in terms of purity, and there shouldn’t be a lot of guessing when it comes to the diet since a possible outcome of a bad fat ratio is a seizure.

Since we’ve been on the diet, we’ve made a number of trips and we’re getting better at accommodating the diet in our travels, so I wanted to pass along some insight for those of you that are just starting the diet or are concerned about traveling while on the ketogenic diet.

Pack Snacks For The Plane

Typically, we’ll measure and pack the food the night before the trip. Travelers are allowed to food through the security checkpoint, so we will pack a lunch and a snack. For the fat exchanges, since our son prefers oil, we use the Medela Breastmilk Containers (2.7 Ounce) bottles. They seal well and, at 2.7 ounces, they are under the TSA 3 ounce rule but provide enough capacity to hold more than a meal’s worth of oil. Since different meals might have different amounts of oil, each container gets labeled and paired with the associated food, and we might pack an extra oil in case we get delayed and need to rely on airport terminal food.

When using mayonnaise instead of oil, the prepackaged Hellmann’s Mayo Packets are a great option. Treat them as liquids going through TSA, but since they are sealed, they won’t spoil sitting out on a long delay on the runway. You may be able to score some of these inside a restaurant in the terminal, too.

In every case, weigh the food before you get on the plan. For the scale to work, it needs to be on a flat, level surface, which is impossible at 35,000 feet.

Pack The Scale And Ketogenic Guide In Carry-On

We pack our scale and ketogenic manuals in our carry on. Both get used for every meal, so whether it’s because of an extra long flight delay or a forgotten lunch, the scale, manual, and an open shop or restaurant are all we need to get food for our son at the airport. Never pack these items in checked bags.

Use TSA Pre-Check

One of the best investments we made recently was to get both my wife and I signed up for TSA Pre-Check. For $85, we can now use the TSA Pre-Check line, which means we don’t have to take off our shoes, or take our liquids or laptops out of our bags. Less disassembly on the front end means less reassembly on the back end, and it makes the whole security screening process less stressful. In order for both of us to go through the Pre-Check line, both of us needed to apply for the program, so keep that in mind.

You Can Travel While On The Ketogenic Diet

Finally, I wanted to let you know that you can still travel while on the ketogenic diet. The keto diet brings with it a lot of lifestyle changes. Dining out, birthday parties, and playdates all require special considerations for food. One of my fears before starting the diet was that we wouldn’t be able to travel. Where would our son eat? What would he eat? The answer is easy. Ever place we travel to will have food.  If we aren’t staying with friends or family, we’ll book a hotel that has a kitchen, which gives us more options to prepare food ourselves and in advance. But even without the kitchen or a refrigerator, we bring our scale and keto guide, buy a bottle of canola oil which doesn’t need to be refrigerated and we’re set to jet.

I hope these tips help. If you have any travel tips that you would like to share, please do so in the comments.

Happy travels!