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!

 

Easier, But Not Easy

We’re two months in to the ketogenic diet. The doctors say that it’s working. We’ve been able to go down on meds without a significant increase in seizures, although the reduction was more due to my son being toxic on the meds rather than the gradual weaning of meds that sometimes follows the diet. But we also haven’t been admitted to the hospital in months, which admittedly is a pretty low bar.

His behavior is better, but it’s still bad. There is less screaming, and the outbursts don’t last as long, but they still happen. And his impulse control is still nonexistent. We’ve had to add a chain lock to our front door to prevent him front running out on the street, which he did. We can still see it in his eyes, when his brain gives up on making any decision and following natural impulses that, for a 5-year-old, involve flipping, and running, and hitting.

It’s still hard to look at him and to see him struggle. It’s still hard to do something fun only to have it end with a seizure because his body gets too tired to prevent it. This picture was taken at a festival in the park next to our house. About 30 minutes after it was taken, he was on the ground having a seizure, concerned bystanders offering to help.

easier but not easy epilepsy seizure ketogenic diet

In the past month, we’ve gotten help to come during the day. We’re also getting additional services through the hospital and through the state. We are getting better at managing. Managing his routine. Managing his seizures. Managing his behavior. The help and structure have made the day-to-day easier.

Easier, but not easy.

Like I imagine so many other families are dealing with, epilepsy has its own gravity that forces everyone to exert much more energy to keep moving. Every step is harder to take. Everything takes longer. Even the simplest things are exhausting. I wish I could grab my wife and son, strap on some rocket boosters, and break free from the unrelenting pull of gravity, but so far, we continued to get pulled back by more seizures or other complications.

Easier, but not easy.

There are families that don’t get easier or easy, and I’m grateful for the progress that we have made and for the support that we continue to receive. I’m still hopeful that all this will somehow, magically go away and that we won’t talk about the year when my son was five and he had all those seizures. We’ll skip ahead from his Disney World fifth birthday party to whatever we do for him when he’s six, and forget everything in between. Short of a magic wand to make it go away, I wish I had a remote control to fast forward to that time.

That would be easy.

 

A Sound To Break The Silence

For the past eight nights, our house has been silent. Our son has gone to bed and woken up without a seizure, without a sound. For the last few months, he has a string of seizures in the early morning, echoing their call throughout the house. But for just over a week, shortly after starting the ketogenic diet, his seizures had stopped, and I had just begun to forget that sound. I had just begun to stop expecting that sound.

But then, a day after he moved back in to his own bedroom, a sound carried up the stairs and down the hall. At first, I thought it was my wife singing in the bedroom, or the call of the fans rumbling through the hockey game on the television. But after my wife shut the door, and after I muted the television, the sound once again filled the room. Down in his room, our son was having more seizures.

epilepsy seizure

I got ready for bed and headed down to his room. Our monitors are still not here, and as much as our bodies resent the lack of sleep that came with having him staying in our bed, I wasn’t ready to trust that his seizures were temporary and that they wouldn’t cluster. So I found a space in the corner of his twin bed, and I laid with my son until he fell asleep. I listened as he had another handful of seizures, and another few in the early morning.

Although we are still very much struggling with some lingering issues during the day, I was eager to return to a quiet house at night and to a restful sleep. I was ready to assume that the noise I heard at night was my wife watching some terrible show on CBS or a drunken neighbor stumbling home after a night out. But for now, I must still keep that part of my brain active that can pick up every sound and distinguish Madam Secretary from a myoclonic seizure, from knowing which is damaging a brain in my house and which is just a seizure.

There are days like today when I wonder if I will ever sleep soundly again. I wonder whether I will over not worry that every sound I hear is my son having a seizure and whether I need to rush down to his room to make sure he has recovered. Living on the edge, all day and all night long, is taking a toll.

There is so much uncertainty, so much to react to, so much to be cautious about. But I am hopeful for the day when the worst thing that I will hear at night is another show on CBS.