To Be A Kid

We’ve seen many ups and downs over the last few weeks. An increase of dosage for one of my son’s new medications brought back unwelcome side effects. His seizures are only slightly more under control than they were before, but he’s exhausted and has a hard time sleeping through the night. His mood and behavior have been bouncing around from stable and happy to angry and defiant.

When it’s at it’s worst, little incidents explode into big ones. The escalation is so fast that it’s jarring and catches us off-guard. It’s so fast and the situation is so frustrating that we don’t always respond in the best way. Then we find ourselves in the middle of the tornado. He’ll say mean things. He tells us he wants us to throw everything away and that he deserves it. I can sense the shame and guilt swell inside and overwhelm him. We hold him and tell him that we love him and wait for the storm to pass. When it does, there are usually tears and remorse and regret. As a father, these moments rip me apart.

These side effects are cruel, especially for someone his age. Between the side effects, the diet, the appointments, and the seizures, he has little time to be a kid. There aren’t many chances for him to be free, to make a mess, and to not have the complications of his life burden him. There aren’t many chances for us to let our guard down, either. We’re always on the edge worrying about him, trying to keep him safe and regulate these side effects. We’re as confined as he is.

But, sometimes, we find opportunities where we can all have fun and enjoy the moment. My son loves dressing up as Captain America, so my wife planned a Super Hero Scavenger Hunt for his birthday. He and his friends had to chase down the evil villain the Snake Robber, the role that I was taking on. The idea of running through the streets with a mask and stuffed snake around my neck made me anxious. I’m a shy, quiet, reserved individual that follows rules and avoids chaos. But I went into it with an open mind and the singular thought that it would make my son (and wife) happy.

I made my way to the location where the superhero party would encounter me for the first time. I waited nervously on a bench in the park while curious onlookers moved further away. Across the park, I saw one of the kids spot me and point in my direction. Then, they charged. Within a minute, they had covered me with Silly String and laughter. My son had a huge smile on his face as he and his friends chased me around the park. Then I used my freeze ray to, well, freeze them and escape to the next location.

epilepsy dad kid childhood seizure

I had a huge smile of my own on my face as I ran to set up the next battle. This time, the kids trapped me until I told them that I hid a dozen of their teddy bear friends in the park. While they looked for them, I escaped again. Eventually, they caught up with me and saw me entering my lair to assemble a machine to steal their powers.

In the final battle, the superheroes found me near the pool assembling my machine. I froze all the heroes again except for Captain America who used his shield to deflect the ray. He advanced on me while his friends watched and defeated me by pushing me into the pool.

epilepsy dad kid childhood seizure

As I laid in the pool, I looked up to see my son with the biggest smile on his face and his arms raised in victory. Behind us, I could hear his friends screaming and cheering him for him. Captain America had saved the day. At that moment, there were no side effects. No appointments. No seizures. There was just my son being happy. And being a kid.

epilepsy dad kid childhood seizure

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.