seizures Archives - Page 12 of 15

Fatherhood And Preparing My Son For A Future With Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Today is Father’s Day.

This morning, like most weekend mornings, I’m going to wake up to the sound of my son pushing the door to our room open, the squeaky hinges announcing his arrival. I’ll open my eyes and watch him toss his green and white blankets and a few of his stuffed animals on to the bed, climb over me and lie down in between my wife and I. He’ll put his fingers in his mouth, close his eyes, and snuggle up next to us, the sound of him sucking his fingers right next to my ear keeping me from returning to sleep. I don’t mind, though. This is how most weekends go, and I wouldn’t want it any other way.

It’s in these early morning hours, as I lie awake in bed next to my family, that I sometimes think big thoughts. When I was a new father, still overwhelmed with idea of being responsible for another life in this world, I would have grand thoughts about the type of world my son would live in. Would there be enough food and water for everyone? Should I be recycling more? What about clean air? Should I get a more fuel-efficient car? Should I bike to work?

As he got older, and as I settled in on the idea that he’s more durable than I had assumed children would be, those early morning thoughts turned to more hopeful things. What number would he wear on his jersey in the NHL? How old would he be the first time he saw the earth from space? How often would they let me visit him in the White House?

For the past two years, after my son was diagnosed with epilepsy, I started asking different questions. These questions were shaped by our experiences struggling to control his seizures, managing his medicine and the ketogenic diet, and trying to normalize his life as much as possible. Would he ever be seizure free? Will he be able to live on his own one day? How can I best prepare him for the challenges ahead? How can I teach him to love himself and believe in himself against the stigma that comes with having epilepsy?

The last question is one that I’ve been thinking about more lately. He’s only in kindergarten, but there have already been incidents where he has been made to feel different because he has epilepsy. Questions about why he misses so much school and leaves early, or the snickers from classmates that come from his bizarre ketogenic lunch that sometimes includes taking a shot of oil, I can see him starting to pull away. He’ll sit by himself, or he’ll tell us he doesn’t want to bring a lunch to school. This is already happening, and he’s only in kindergarten.

The more involved I become with the epilepsy community, the more I get a glimpse of the challenges ahead for my son. I read the callous, insensitive tweets from the uninformed, misguided people who post messages about “being glad that they don’t have epilepsy” or how a video or light show “almost gave them epilepsy”. I read the messages of sadness and despair from those living with epilepsy and the stories of discrimination, and about how epilepsy “isn’t being a real thing” because there aren’t any visible signs.

There are many mornings when I’m lying next to my son and I get scared. I don’t want that world to squash the light inside the little boy who is so brave and who cares so much for those around him and who loves and who dreams incredible things. I’m worried that I am not equipped to help my son navigate that world, and that I will fail him…fail at the greatest thing that I will ever do, and that is being a dad.

On those days, when I seem to need it most, he will roll over and puts his arm around me. I instantly feel better. I remember that the most important thing I can do for my son is to love him unconditionally, which I do in abundance.

I think about that community where I have seen so much sadness and I remember the overwhelming feelings of support and hope that are much more common. They share their stories, many of whom you may read as part of this blog relay, and I, too, am hopeful and inspired to lend my voice to the choir…to sing with them the stories of what it means to be the dad of a child with epilepsy, the struggle, the joy, and the lessons that I learn along the way.

Maybe it will be this morning, when I won’t be awoken too early by the sound of a creaking door, or him sucking his fingers. Maybe I’ll feel confident that I’m doing my part by advocating for my son, and I’ll think about how far we have come, and that I’m leading with love and helping build a foundation in him that will help him face the challenges that will be ahead. Maybe this morning I will be able to fall back asleep, only to be awoken a few hours later by the four most magic words that will remind me how lucky I am and how hard I will fight.

“Happy Father’s Day, Daddy.”

NEXT UP: Be sure to check out the next post tomorrow by Whitney Petit at Changing Focus: Epilepsy Edition for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

Keeping The Lid On

We had a few good weeks. After a year on the ketogenic diet and what seemed like the constant juggling of medicine, we were only seeing an occasional seizure in the early morning. The behavioral issues leveled out, even if the problems with attention and ataxia did not. But we felt stable enough that the conversation with our neurologist turned to talks of lowering one of my son’s medicines.

There was one medicine, in particular, that we started last year while we were living on the neurology floor of the hospital. It was one of the rounds on the bombardment of medicines that my son was given to battle the endless onslaught of seizures attacking his brain. After the smoke cleared, we left the hospital with a long list of prescriptions that included a few pills of questionable effect. Now that we were relatively stable, we decided to lower the dose of the first medicine to see if it was working and hopefully lessen any its side effects that were burdening my son.

The first reduction (with every medicine, there is a gradual weaning, not an abrupt stoppage) was uneventful. We did not see an increase in seizures, but we also did not see a reduction of side effects. After the second reduction, though, we started to see a change. Instead of confining themselves to the early morning hours, we started to see seizure activity during the day, as well. The myoclonic jerks that, in hindsight, acted as our canary in the epileptic mine slowly came back. At first, there were only a few…so few that we probably missed them initially. But then there were more, and they were hard to ignore. Then the tonic-clonic seizures also crept in to the daytime. Then the most telltale signs of a problem returned…the exhaustion, the uncontrollable sadness, slurring and having a hard time finding words, and the anger.

Our neurologist scheduled an EEG that confirmed that the subclinical seizures were also back and his EEG background was a mess. The report showed that the medicine that we suspected wasn’t helping had been working, so we again adjusted course and started raising the dosage.

Unfortunately, it was too late. By the time we realized that the medicine was working, the seizures were already cascading through my son’s brain, and it would take days before the increased dose would have an effect. We had taken the lid off the pot and it was boiling over.

As the seizures continued and the effects of each seizure lingered longer, we used our rescue medicine to buy us some time until the increase in dosage kicked in. We made it through the night, but the next morning the seizures and my son’s exhaustion and processing difficulties continued. “My brain is still going backwards,” my son said, which was his way of communicating that something was still wrong. We contacted our neurologist and by that night, we found ourselves admitted to the neurology floor.

The technicians hooked him up to an overnight EEG and within an hour our neurologist came in to tell us that his readout was still a mess. The plan was to monitor him to determine if we needed to introduce a temporary medicine to hold us over until we were back up to our working dose of his regular medicines, but the bridge medicine was one that, while it worked for seizures, brought with it rage.

We spent the night watching the EEG screen, pushing an alarm for each seizure we saw and calling out in to the night which type of his many seizures we were reporting. That night was a combination of a lack of sleep, concern for our son, and dreading the threat of the temporary medicine. By early morning, my son had gone a few hours without a seizure and I fell asleep next to him on his bed.

We woke up the next morning and my son started to feel better. The doctors came in and said, while his EEG still wasn’t great, it was trending in the right direction and that we could go home. While it seemed terrifying to leave while things were still “not great”, we learned last year that a positive trend is enough to go home with.

As we left the hospital, I knew, like I do every time, that this wouldn’t be our last time there. While this episode seemed like it was caused by a dosage change, there is always the concern that an illness will cause more seizures, or that a medicine stopped working, or that it’s a progression of my son’s condition.

We seem to be just trying to keep the lid on his seizures and the side effects of the medicine we use to try to control them, when all we really want is for someone to turn down the heat.

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.”