Miles To Go Before I Sleep

Last week, I traveled for work. As much as I was going to miss my family, a piece of me was looking forward to the possibility of sleeping through the night.

After we were able to stabilize (but not eliminate) our son’s seizures, we moved him back down to his room, and we’ve gone through a number of devices to be able to see and hear him at night. Our house is made of brick and metal, and the wireless signal is terrible, so most solutions that we’ve tried have been spotty. I still wake up in the middle of the night to find that an app has crashed or that the monitor has lost contact with the camera. My engineering autopilot kicks in, and I reach over and reset the monitor. I always joked that I could, but now find myself literally troubleshooting in my sleep. After the link is back up, I get back in bed and stay just awake enough to make sure I can hear the crackle from the monitor’s speaker before I drift back to sleep.

The first night on the road, my habits stuck. I woke up because it was too quiet and reached for a monitor that wasn’t there. By the third night, I almost slept through until morning…almost. Still, it was the best sleep I’ve had in months. I awoke feeling guilty because I wasn’t home at my digital post keeping my promise to watch over my son.

The night I returned home, I walked in to the house around midnight. I dropped off my bags in the living room and made my way in to the bedroom. I put on my pajamas, brushed my teeth, and made my way in to bed. I was so exhausted that I didn’t realize that my son was also in our bed, sprawled out and taking up most of the space. I climbed in, taking only enough room as to not tumble on to floor. My son woke up, only briefly, enough to say “daddy” with the flash of a smile, before moving closer to me and falling back asleep. I soon followed.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
~ Robert Frost

Halloween, Birthdays, And The Ketogenic Diet For Epilepsy

My son has been on the ketogenic diet for about six months. He’s on the diet because he has refractory epilepsy, which basically means that the half-dozen medicines that he has been on in the last year haven’t been able to control his seizures. The ketogenic diet is what the doctors try when the medicine doesn’t work.

The diet works by getting the body to use fat as its fuel source, which causes it to produce ketones. How do you get the body to use fat? You change your diet so that it doesn’t have a choice. The ketogenic diet is a high fat diet where 90% of the calories come from fat. It includes enough protein to grow and a minuscule amount of carbohydrates, but the diet is primarily oil, butter, cream, and mayonnaise.

The diet is hard. For parents, it’s labor intensive to measure every part of a meal. There are urine strips and blood draws to make sure the diet is working and not doing harm. For my son, the diet means he can’t eat whatever he wants. He can’t just grab a snack. He can’t pig out. There are no pizza parties, no ice cream socials, and no guilty pleasure of hitting a drive-through. The diet and resulting lifestyle changes are a really tough thing to put anyone through, especially a child, which is why it’s not the first option in a treatment plan.

October happens to be a particularly big month for carbohydrates. The orgy of chocolate and processed sugar that is Halloween comes only a few days after another celebration of sugar and flour, my son’s birthday.

epilepsy keto ketogenic seizure

This year, being on the diet meant that every door we went to and every “Trick or Treat” that my son spoke was for candy that he couldn’t eat. It also meant that the tray of cake my wife brought in to the school for my son’s class was for everyone except the birthday boy.

As impossible as it all seems, my son never complained. He knew that he couldn’t eat the candy because it wasn’t on the “hockey diet”, and he was happy to trade the mountain of candy that he collected for a present. He devoured his special “keto cupcake” (made with soy flour, mayonnaise, and heavy cream) while his classmates ate regular birthday cake.

epilepsy keto ketogenic seizure

I’m not sure I could be on the diet. I’m relatively certain I couldn’t do it without complaining. I’d look at all the people around me eating whatever they wanted, whenever they wanted, and I would feel cheated. Maybe it’s a blessing that this is happening to my son when he is so young, before he has a reference for what he is missing. Or maybe he’s just a strong, special kid, like the many other kids that are on the diet to help control their seizures.

The diet seems to be working for my son. Would I rather he be allowed to shove his hand in to his Halloween bag and get sick eating too much candy on Halloween night? Absolutely. Do I wish that he didn’t have epilepsy, or that he had the kind that can be controlled with one, easy medication? Absolutely. The diet is hard. It’s hard on his body, it’s a hard lifestyle to maintain, and I imagine that it’s hard to feel different from everyone else.

But he does have epilepsy, and he has a complicated kind that doesn’t respond well to medicine. I’m just grateful there was another option.

 

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.

epilepsy hockey seizure skating keto

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.