epilepsy dad

Tag: side effects

  • Farewell, Onfi

    Farewell, Onfi

    Dear Clobazam,

    Well, it’s been a long road, Clobazam. May I call you Onfi? We’ve known each other long enough now that I feel like we can use our informal names. You can call me Dave.

    As I was saying, it’s been a long road. We’ve known each other for more than eight years. Our doctor introduced us when our son was in bad shape. She said although you were relatively new, you had been known to help other children like our son, and, let’s face it, we weren’t in a position to turn away anything that could potentially save him.

    I don’t need to tell you, but the list of side effects with benzodiazepines is intimidating, especially for children. There was also the matter of cost since our insurance didn’t fully cover you. But we were trying to save our son, so we’d pay anything, and we were fortunate to find the National Organization for Rare Disorders that helped us.

    While we were trying to figure out the financials and come to terms with the side effects, we started to see a reduction in seizures. As messy as everything was, that was the light that we followed. As you know, we had tried so many other medications, and they either didn’t help or made things worse or came along with catastrophic side effects like your cousin Klonopin or the nefarious Keppra.

    When we started to see behavior issues after increasing your dose, we feared the worst. What Keppra had done nearly broke us, and it was happening again with you. The thought that the only way to control the seizures was to let the emotional regulation get out of control was a choice I didn’t know that I could make. Fortunately, backing off on how much of you my son used brought him back to us—too much of a good thing, as they say.

    We made a few adjustments over the years regarding how much of you and when my son needed you. Eventually, you were only required at night and became part of our nighttime routine, like tea and bedtime stories. Even though you couldn’t make all his seizures go away, you gave him a chance at a much better, less seizure-filled sleep which also resulted in a better quality of life.

    When our doctor brought up the idea of letting you go, I was nervous and skeptical. It’s not that I forgot the dangers of long-term use, but you were one thing I knew had worked. She said we would take our time to make sure the separation didn’t cause more stress or seizures. It would be a long goodbye.

    About halfway through, we noticed a few changes in our son. The seizures mostly stayed the same, but he was always exhausted and sometimes irritable. We paused the wean for a few weeks until, fortunately, we saw our son stabilize. Even though it turned a ten-week wean into a few months, the extra precaution was warranted, given our track record.

    Once we continued to reduce the dosage, we didn’t stop until it was done. When I filled his medicine containers, I did it for the first time in a long time without adding any of you to the nighttime compartment.

    And here we are. We’re a few weeks past our separation. Our son is doing well. We increased the dosage of a different medicine to help compensate for not being under your…protection? Influence? I don’t know what the right word is.

    We may not need you now, but you will always have been a part of our journey and one reason why our son has made it to where he is today. For that, I am grateful.

    Farewell,

    Dave

  • On The Surface

    On The Surface

    Recently, on the way to school, my son told my wife that he wasn’t feeling good. She turned around and took him home where he slept for three hours.

    Usually, he will try to push through. I don’t know if he doesn’t recognize what is happening in his body or if he is too stubborn or eager to please, but he goes dangerously beyond his limits until he crashes. We have spent so much time picking up the pieces and putting him back together after he does.

    My son started having seizures before he developed a reference or the vocabulary to describe what he was feeling. He only knows seizures, and medications, and side effects, and fatigue. There was never an absence of these things that he can recall and contrast when it happens to him today. For him, that is normal.

    We have spent years watching him closely and trying to be the external monitor of his condition. We ask probing questions when we suspect that he is off, but he often answers “yes” as if he assumes we know what he is feeling or can describe what he can’t. But we only see the external signs. We can only see what is on the surface. And our vocabulary and ability to describe what is happening to him is as limited as his.

    Me: “Do you have a headache?”
    My son: Yes.”
    Me: “Do you know what a headache is or feels like?”
    My son: “No.”

    I write every day. At work, I use words to describe complex systems. But the words that I know seem inadequate to describe what I can only imagine he is feeling. It’s words and concepts in another language that I am just beginning to understand after five years. We’re trying to use that language to communicate but too often things are lost in translation.

    It’s another one of the many frustrating things about being the parent of a young child with epilepsy. I want to make the seizures go away, but I can’t. I want to eliminate the side effects of his medication, but I can’t. At a minimum, I want to understand what he is going through so that I can help him but there is so much about his condition that is invisible to us. It’s a terrible feeling of helplessness.

    I’m hopeful that, as he did on the way to school, he’s starting to build awareness of what is happening inside his body and vocalizing it. Becoming an advocate for himself and expressing his needs will be critical for him to be able to navigate a world that is not always kind or forgiving or tolerant of people who are different.

    For the past five years, we have been the monitors of his condition and the ones expressing his voice. As much as I felt ill-equipped for the role, it was necessary because my son was not able to do it himself. It made me feel needed and useful instead of focusing on my inability to find a way to make the seizures stop. I am comfortable filling that role but I can only account for what is on the surface. There is so much more to him and his condition than what I can see.

    The reality is that the more I take on that responsibility, the longer it will take my son to learn to do it himself. It will take longer for those symptoms and feelings that exist below the surface to reveal themselves. And it will take longer for him to get what he needs because he won’t learn to put his needs out there. At some point, the help I am trying to give him becomes the thing holding him back.

    Reality and I don’t always agree, but it is usually right.

  • Wall Of Limitations

    Wall Of Limitations

    This summer, my son participated in a week-long baseball camp. We knew it would be physically demanding so we spoke with the coaches before we registered him to make sure that he could rest and leave early if he needed it. It’s a phone call we have made before and will likely make many times in the future that serves two purposes. First, it helps us make sure that our son will be safe. And second, it identifies any places not willing to make accommodations for people who need them, which is not a place we want to be.

    My son’s nanny took him on the first day and the coaches welcomed him to the camp. He managed to stay for half the day but then took a three-hour nap when he got home. But he had fun and he made friends. The second day was much the same with a long nap after a shortened day.

    By the third day, he didn’t want to go. He was noticeably tired but he managed to make it out the door. His nanny coaxed him on to the field and, after almost thirty minutes, one of the coaches managed to finally get my son to participate. He left early again that day.

    On the last day of camp, we planned to let him stay all day because they were going to play a game. His nanny made sure he took frequent breaks and he made it through the day and finished the camp with a smile.

    The end of the camp coincided with the Little League World Series. I watched the grueling tournament and wondered, given how the camp went, whether my son could do anything like that. By now, I don’t have any grand vision of him playing in the major leagues, but I do want him to continue to play something that gives him joy and that makes him feel like a part of a team.

    It made me think that someday we’re going to run into a wall of limitations. We’ve faced small ones before, but we’ve managed to pass them mostly by watching our son climb over them. We’ve managed to keep our distance from larger walls by adjusting our path. We swapped hockey for baseball. We learned to work around his physical and endurance issues. But we haven’t been faced with consciously confronting the difference between possibility and probability. Potential versus practical. Fantasy versus reality. We haven’t faced the wall that was once on the horizon but is now uncomfortably close.

    And every day we are moving closer. It’s starting to block our view to the world behind it. I’m beginning to wonder what we will do when we reach it. Will it be too big and stop us in our tracks? Will it be too overwhelming and send us back the way we came? Or will we do what we have always done and follow our son as he finds a way to climb it, even though we know there will be an even bigger wall behind this one?

  • Happy Anniversary, Epilepsy

    Happy Anniversary, Epilepsy

    Four years ago this week, my son had his first seizure.

    Four years.

    Almost half his life.

    He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

    Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

    And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

    It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

    Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

    After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

    In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

    Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

    So, Happy Anniversary, Epilepsy.

    I didn’t get you anything.

    Because I hate you.

  • No Free Lunch

    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.