The Day My Son Stopped Skating

Before my son was born, we already had his name picked out. The name came from a hockey player on a team that I liked…not my favorite player, mind you, but rather a player who’s last name sounded like it would be a cool first name for a future hockey star.  And so he was named, and so began his inevitable indoctrination in to the world of hockey.

On my son’s second night of life, he and I laid on the couch in hospital room watching the Colorado Avalanche on television. Well, I was watching. He was sleeping and absorbing the game through osmosis.

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When he was two, even before he had his first haircut, he got his first hockey stick. He was just learning to run, but we were already playing floor hockey almost every night after I got home from work. The more exposed to the game he got, the more aspects of it we incorporated in to our play, from national anthems, to player introductions, to raising the Stanley Cup after the last game of the night.

epilepsy hockey seizure skating keto

When he was three, he broke his foot jumping off a chair. The break required a cast (or four casts, since as new parents, we hadn’t quite figured out how to keep his cast dry between the bath and the snow on the ground). But that didn’t stop him from playing hockey, shuffling around and taking slapshots from his knees.

epilepsy hockey seizure skating keto

Once his foot healed, we bought him his first pair of hockey skates. We went to a hockey store where he was surrounded by every pad, stick, and puck he had imagined himself playing with while watching the games on television. He sat on the bench getting sized for his stakes, ready to take the ice.

epilepsy hockey seizure skating keto

When he finally hit the ice, I half-expected him to skate circles around me. He didn’t, of course, and he spent most of is time on the ice (either from falling or intentionally sliding on his belly), but there were moments pushing around the skating aid where I could see his gears turning, imaging himself crossing the blue line for a breakaway goal.

epilepsy hockey seizure skating keto

From there, we took a parent-tot skating class before he joined the “learn to skate” program. During every class, he would look down the ice at the older kids in the hockey class, and he would ask how much longer before he could join them. It motivated him to get better and, a few months before his fifth birthday, he was finally registered for the “introduction to hockey” class.

The first day of class, he filled the locker room with electricity as he was finally able to put on all his hockey pads and jersey. He lined up with the rest of the class, ready to take the ice. The door opened, and the miniature hockey team took to the ice. When it was my son’s turn, he put one foot on the ice, then the other, and then fell straight down. Of course, wanting to record this moment, I have this inauspicious start on video, and I had planned on showing his teammates someday when he was playing in the National Hockey League.

epilepsy hockey seizure skating keto

But then, shortly after his classes started, he had his first seizure. By the end of the year, his seizures had gotten out of control, and his fatigue and the side effects of the medicine made skating a dangerous impossibility. He lost control of his body that he was once able to control so completely. He was ripped away from the sport and the activity that he continued to talk about and watch on television every day.

We no longer thought about skating or the NHL, we just hoped that the seizures would stop, and that the damage done from the seizures and the toxicity and side effects from the medicines wasn’t permanent. There were days when my son was too tired to function and too wobbly to stand but he would try to go in the basement and take shots. It broke my heart to see him like that, but I would go down and play with him, sometimes fighting back tears on the really bad days.

There were days when I thought that was where our story would end. But thanks to the amazing people who cared for him, my son’s condition started to improve. Although we are not seizure free, they happen mostly at night. As we continue on the ketogenic diet and adjust his medications, my son has regained much of his balance. We started working with an off-ice coach so that he can be more active and build his stamina doing something that he loves. Then, a few weeks ago, a day we had almost stopped hoping for came.

We hopped in to a taxi and headed to our local ice rink. My son put on his helmet, his jersey, and we helped him put on his skates. He stood and started walking down the hallway towards the ice. The next few steps felt like they came in slow motion. I held my breath as he grabbed the side of the boards with his right hand and stepped on to the ice with one foot and then the other. After a few seconds, he was free of the boards, the edges of his skates digging in to the ice and propelling him forward.

epilepsy hockey seizure skating hope

Even though we only spent a short amount of time on the ice, it was enough for mark a milestone in our journey with epilepsy. We don’t know what the future holds, how long the diet or the medicine will work to control his seizures. We don’t know if he’ll be able to continue to skate if his seizures spike again or if he develops new side effects or complications as he ages. But for as dark as things have been, as much as my son has gone through, and as impossible as everything had seemed, for one afternoon, he was able to do what he loved, and we celebrated that moment as if he had just won the Stanley Cup.

 

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.

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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!

 

Asking The Big Man For A Reason

Most nights, I ask God why this is happening to my son.

We went in for our three-month checkup for the ketogenic diet and also saw our neurologist. The good news is that the diet is helping. The bad news is that his EEG looks worse than it did last time. The good news is that the neurologist thinks it’s because the medicine he was toxic on and that we weaned him off was helping with his seizures but there is another medicine we can try. The bad news is that we’re adding yet another medicine, and that the new medicine has some really scary side effects, especially if it is introduced too quickly.

We knew this was coming. Our neurologist has been mentioning the new medicine for weeks now. We had hoped that, as we weaned off the other medicine, that the diet would have done more. But as his nighttime seizures increased, we slowly started to accept that the diet and the medicine that he was still on wasn’t doing enough. In the end, we opted to give him the new medicine, and his first dose was last night.

My wife is out of town, so it was just me and my son. After I triple checked the literature to check how much to give him, I cut the pill, placed it on the counter, and watched him place it, along with his other pills, in to his mouth, grab the water, and swallow the lot.

We won’t know whether the medicine will work or not for at least weeks, and he won’t be up to the target dose for months. That is, unless the side effects kick in, which would mean we have another set of problems to worry about. But maybe this will be the first medicine out of the 7 we have tried that he won’t have an adverse reaction to.

God and I have a…complicated…relationship. We haven’t always seen eye to eye. Like my biological father, God and I hadn’t really talked in years and I rarely (if ever) talk about either of them. Unlike my biological father, though, He and I started talking again when my son was born. I thanked Him. I thanked Him for blessing me with a healthy baby boy. I thanked Him for my family. I thanked Him for my life.

I still thank Him. What is happening to my son is a terrible thing. Like many parents, if I could take this burden from my son and bear every seizure instead of him, I would. Unfortunately, it doesn’t work that way.

But even as I question the reason that this is happening, even as I wonder why this is part of His plan, and even though I wonder how He do this to a child, even though He may never answer, I still thank Him for the gift that is my son.