Epilepsy Dad

Learning To Be Brave From My 5-Year-Old With Epilepsy

A few weeks ago, before school started, my son was invited to a play date with other kids that were going to his new school. It was a good opportunity for us to meet the parents and for our son to meet his future classmates, and he was excited, even though he was having more seizures in the days prior. The day of the play date, he took a nap, woke up, and had another big seizure as he was getting dressed. With eyes full of tears, he said that he didn’t want to go anymore. I sat down on the floor next to him, held him and rubbed his back, and I asked him why. “Was it because of the seizure?” Initially, he said yes, but then he said that it was because he was nervous.

I let him know that it was okay to feel nervous, and that everyone gets nervous. I told him we didn’t have to go, or we could go and leave if the playground became too overwhelming. He cried for another minute, then he took a deep breath, put on a very stern face, and said out loud “I can do it.” He stood up and finished getting dressed. I checked in with him a few more times as we packed up his stroller, giving him probably too many opportunities to change his mind, but he was committed and we headed down the street to the park.

When we got to the park, he stayed by my wife and I initially, but he introduced himself to the other children. Eventually, one of them led him over to a tree that they were climbing, and my son eagerly joined in. He would climb the tree, maneuver to a branch, and drop down, Ninja Warrior-style.

On one of his climbs, he had a seizure. I saw his body stiffen and heard the tell-tale sound that accompanies his seizures, so I grabbed him and gently lowered him to the ground.

Once the seizure stopped, my mind started to race. Did the other kids see? Would they cast him aside? He wet his pants during the seizure. Did the other kids see that? Would they make fun of him? I questioned whether we should have brought him to the park at all and why I convinced him to put himself out in front of these new people when I knew he was already having a bad seizure week.

As he started to regain his composure, I asked my son if he was alright, and if he wanted to go home. “No,” he said. “I want to stay.” After a few more minutes, he stood back up. We dusted him off and did an inspection. His pants weren’t that wet and, aside from being a little hazy, we couldn’t see anything wrong. I asked what he wanted to do, thinking that running away and going home was the best option. “Climb the tree,” he said, as he walked back over to the tree. He grabbed a think branch with both hands, put his foot on the trunk, and pulled himself up.

I was never very brave, and I struggle to not project my fear on my son. I want so desperately to not poison his bravery with my overbearing desire to protect him from the world. I was different as a kid. I was awkward, and uncomfortable, and afraid. I know what it is like to be picked on for being different. The world can be a cruel place when you are different.

My son has epilepsy. He has seizures. That makes him different, too. There will be times where those differences are on full display, in front of his friends and his peers. I don’t want him to feel shame for who he is or because he has epilepsy, so my natural tendency is to hide. But he is teaching me that the right answer isn’t for me to encourage him to run away when he has a seizure or when he falls down. It’s my job as his dad to encourage him to put himself out there, even on those days when it’s hard. It’s my job to encourage him to get back in to that tree and climb.

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.

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.

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 [easyazon_link identifier=”B000WKNW2Q” locale=”US” tag=”lightningbuddha-20″]Medela Breastmilk Containers (2.7 Ounce)[/easyazon_link] 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 [easyazon_link identifier=”B00HZAJHR0″ locale=”US” tag=”lightningbuddha-20″]Hellmann’s Mayo Packets[/easyazon_link] 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!

The First Day Of Kindergarten

Last week, we had another happy milestone: the first day of kindergarten.

The week before, my wife, son, and I went in to meet his teacher for the first time. I left work and met my wife and son at the school…a big, square, old building with dark bricks and small windows. We walked through the tired playground, past the worn jungle gym, and up to the entrance in the back. I pulled the heavy door open, a door that showed much more wear up close, and we entered the lobby. The door landed heavy against the frame as it closed behind us, echoing against the painted cinder block walls of the empty school. We entered the front office to sign in. The dim fluorescent lights that hung overhead did little to brighten the dark brown walls and dark wooden furniture.

In Colorado, our son was in a new charter school, where everything was freshly painted, where the walls and the books and the toys were new and clean. When we came out to Philadelphia, he started in a bilingual French school that was small and tucked away on the first level of an office building, but that school was also relatively new. Those schools were everything that this school, an inner city public school, was not. But this school had one important thing going for it. It had the services that our son needed.

Our teacher came in to greet us in the office and brought us to her classroom. The special education teacher, who my wife had also spoken to on the phone, came to join us, as well. After a few minutes, the conversation went from pleasantries to epilepsy and our son’s history, and we could see his teacher start to tense up. She obviously didn’t get the message that my wife had sent giving her a heads-up, and she was slowly being squeezed by the overwhelming pressure that one of her twenty-eight students had such significant issues. Twenty eight kids with only one aide is daunting enough.

I took our son to the shelves of heavily used books and read while my wife filled in more of the story for the teachers. We’re sensitive to have too many of those conversations while our son is listening. He could probably recite his history by himself, but there have been too many days when his epilepsy history is the only conversation people have about him, and it’s usually about him but not with him.

After a length discussion, his teacher looked less like she was ready to run away, and that was our cue to return. With the one-on-one assistance request, the shortened school day, and the other medical accommodations explained, and I led my son back to her desk. He reintroduced himself to his teacher, and she spent the next few minutes testing him on his kindergarten readiness…numbers, shapes, and letters. The overachiever, he read more letters and counted higher than she had asked him, although in all honesty, it was most likely because he has a hard time following directions, not because he was showing off. But she smiled and said that he was more than ready to start kindergarten.

When she said those words, it was hard to not be emotional. Since we moved to Philadelphia and since his seizures started, my son had probably only gone to school for a few months, scattered out around the times when he wasn’t seizing, or too sick, or in the hospital. He hadn’t gone long enough to develop many bonds, or to just be around other kids, or people who weren’t his parents or a doctor or nurse. In that moment, when his teacher said those words, there was hope…something that was so hard to hold on to in the last year. But here it was, back again, filling the room and my heart with possibility.

The night before his first day, my son was as excited as I had seen him in a while. We packed his clothes, supplies, and a keto lunch. Rightfully so, it took him longer to fall asleep, but he finally did and we weren’t far behind.

When he got up the next day, I was still at home so we made a big fuss, and a sign, and took some pictures. He was still tired…I’m not sure how much he actually slept the night before.

Probably because he was so tired, he had a seizure shortly after breakfast, something that would have rocked us only a few months ago, but he quickly recovered and went right back to getting ready. I had to head in for an early meeting, but I constantly checked my phone as my wife texted me the details of the drop-off and his excitement. He didn’t have any more seizures that morning, and he had lunch and recess with his classmates.

After recess, I was there to pick him up and take him home for his nap. As we started to leave the classroom, his teacher told the class that Junior was going home, and they all said goodbye to him as he left the classroom. “Bye,” he said. “See you tomorrow.” We headed out the door, down the dark, cinder block hallway, past the dim office, back through the heavy, brown doors and through the tired, aged playground. And the day could not have been any brighter.