No Free Lunch

Early one morning, I was sitting in the living room writing when I heard my son leave his room and go in to the bathroom. He was in there longer than usual and I could hear the muffled sound of banging. After a few more minutes, he came out of the bathroom and I asked what had happened. He explained that he was washing the bucket we had given him the night before when he told us he had an upset stomach. He had thrown up in the middle of the night.

This wasn’t the first time this had happened. My son has been on the ketogenic diet for more than two years. The “keto” diet is a high-fat diet used to treat hard to control epilepsy and it’s hard on his stomach. In addition to his seizure medication, the diet forces him to also take vitamin supplements and medicine for reflux, constipation, and acidosis. Constipation, diarrhea, cramping, and vomiting have been frequent visitors since my son was on the diet.

It’s not only hard on his body, it’s hard mentally, too. He can’t eat what we do or, if he does, he has to have a shot of oil or some other fat on the side. And he generally can’t have more of any one thing without adding more oil. He can’t have a slice of pizza. He can’t have a bowl of cereal or a bag of chips. When he’s at a birthday party, he can’t have a piece of cake or candy. We make modifications, like bringing along a “keto cupcake”, but it’s not the same. Because he is who he is, he endures with little complaint.

We make a handful of meals that he likes where the fat is hidden in the recipe. A soy flour and mayonnaise crust for pizza is one of his favorites. With that, there is fat in the crust and oil mixed in with the tomato sauce so he doesn’t need to have oil on the side. But we don’t have many of those meals, so we’ve been repeating the ones we do have for months.

To add dietary variety, the doctors want him to eat more “real” food. But for that we need a source of fat, which is generally a oil. And that’s what we did for dinner the night before that led to the bucket and the early morning cleanup.

We’ve lowered his ratio over the last year so that he needs less fat, but his diet is still more fat than not. I want to get him off the diet completely, but the doctors say it is working. It’s not enough to stop his seizures, but they think it’s helping his overall brain function and raising his seizure threshold higher than it would be off the diet. I’m less convinced, but I’m also the one that sees how hard the diet is for him every day. And there are certain rights of passage with food that I went through as a child. Eating an entire box of Lucky Charms. Folding a real piece of pizza in half and devouring it. Trying things at the farmer’s market. He’s missing out on all of it.

There is an acronym I remember from my economics classes that was also used in the Robert A. Heineken story The Moon Is A Harsh Mistress. TANSTAAFL, or “there ain’t no such thing as a free lunch,” is the idea that you can’t get something for nothing.

When we started the diet, we saw it as an alternative to more seizure medicine. It was supposed to be the prescription that helped his seizures without the side effects. It was supposed to give him a better quality of life. Maybe compared to another pharmaceutical, it did. But it didn’t come without its own downside.

Because everything comes at a price.

The Impossible Choice And The VNS

There are still days when I think that this is all temporary and that my son will someday outgrow his condition. The medicine, and the side effects, and the diet are all short-term measures that we are only doing until his brain sorts itself out, and then we can stop them altogether. These inconvenient years can become a distant memory.

Holding on to that fantasy is partly what made me reluctant to agree to VNS surgery for my son. Vagus nerve stimulation (VNS) is a technique used to treat epilepsy that involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. In theory, this stimulation can be tuned to disrupt my son’s brain’s bad habit of firing all its neurons at the same time in uncontrolled bursts, which is what causes a seizure.

There is a sliding scale of expectations with the VNS. Best case, it helps manage his seizures and we can revisit his medications and the ketogenic diet. Next best case, it helps regulate the break-through seizures he is still having. Worst case is the same worst case as every new treatment we try…nothing happens. Except, of course, for a list of new risks and side effects, both from the surgery and from the stimulation. Tingling, numbing, an altered voice, headaches, difficulty swallowing or breathing, just to name a few.

epilepsy dad vns sketch

But it wasn’t just the risks that made the decision difficult. The surgery feels more permanent. They’re going to cut in to my son and insert a box with tiny wires wrapping around a nerve that leads to his brain. Once they cut him, he cannot be uncut. Even if we remove the box and wires because the seizures do go away some day or because it doesn’t work, he will have a scar to remind him of the hardships that he had to endure at such a young age. There will be no room for denial or pretending that none of this happened.

Because it is happening.

Whether we have the surgery or not, whether it works or not, this is our reality. As I struggled with my decision, another epilepsy dad told me that we should do whatever we can to help our children. Whether it works or not, if there is a chance that it can make their lives better, it’s worth it.

epilepsy dad VNS decision

In the end, that has to be enough. To keep hoping for a better life and to keep trying things, even following failure after failure. Accepting the idea and agreeing to the surgery is another in a long list of impossible choices.

We scheduled the surgery, but I wake up every day wanting to call it off. To keep my son whole. Time and his condition, however, are quickly taking aware that option.

A Message Of Hope

I was nervous walking up to the doors of the classroom. I put my hand on one of the door handles, leaning in close, hoping to hear the conversations in the room. I turned slightly and could see in to the room through the gap between the two doors.

The tables were arranged in a “U”. The door that I was hiding behind was in the back of the room, so I saw the face of the presenter and the backs of the heads of some of the attendees. Shifting left and right, I could see the sides of the faces of those seated on the sides. I took a deep breath, turned the handle, and quietly walked in to the room.

As I came through the doors, the presenter at the podium and other staff smiled and greeted me quietly and warmly. A few of the attendees…parents…turned briefly to look at me and then back to the presenter.

As I moved to a seat in the back of the room, the presenter said  “…and you will hear from one of our parents shortly” and gestured towards me. I sat, flashed a smile and casually nodded as I made eye contact with the other parents that were now looking in my direction.

I pulled open my laptop, pretending to make last minute changes to my slides (that were actually not mine, they were my wife’s). I wasn’t ready for eye contact. I took a few deep breaths and tried to calm my nervous energy.

I had been in this room before. Just over a year before, I sat where the other parents were sitting, learning about the ketogenic diet. Like these parents, I was there because I had a child with epilepsy that was not responding well to medicine. Like them, I was scared…about epilepsy, about the future, about how scary and terrible and daunting the diet seemed to be. Like them, I was there trying to find hope.

The keto team at the hospital puts on these information sessions once a month, giving the dirty details of the ketogenic diet as a treatment for epilepsy. The day is filled with the history and the application of the diet. There are demonstrations of how a meal is measured. The social worker talks about support during the journey. And at the end, the grand finale, a parent of a keto kid takes the stage.

On that day, that parent was me.

My mind kept going back to when I was in the class. We had only been out of the hospital for a month or two, and my son was still seizing, still not responding to medicine, and still having side effects from the medicine that he was on. I was still reeling from the trauma of his ongoing condition. My wife had to stay home with my son, so I went to the class alone…cared, overwhelmed, and alone.

I remember being more buried by the information that was being presented. The diet works for some people, not for others. The diet is hard work. Thoughts of what was happening to my son mixed with the sad possibility that the diet wouldn’t work, or that it would but he wouldn’t be able to scarf down a bag of potato chips or eat a candy bar. By the time the parent speaker, Amy, stepped up, I was raw.

Amy talked about her son who was on the diet for two years. She talked about how the diet worked for them, and that it was hard at first, but became easier. She shared some of her tips, and she brought her son in with her and he sad quietly eating his snack…a snack that looked like a normal snack, except for the shot of oil at the end. After the class, I talked to her, and we talked about what was happening with us, and I asked if my wife could contact her. She said yes. Because, as I’ve learned, we’re all in this together, and we need to support each other, because no one understands what we’re going through like other people going through the same thing.

I thought about Amy, and about how I felt sitting on the other side of the table, as I nervously walked up to the podium. I made a checklist in my head of the things I wanted to talk about. I wanted to talk about how scared and overwhelmed I was, and how hard the diet was at first. I wanted to talk about my son, and how much better he was doing since we started the diet. But mostly, I talked about hope, the thing that I went to the class desperate to find a year before, and the thing that I most wanted them to leave with.

I scanned the room. One mom who was too overwhelmed and had left the room was making her way back to her seat. The other parents looked exhausted after a long day. And now, they were looking at me.

“Hi, I’m David, ” I began, “and just over a year ago, I was sitting right where you are.”