seizures Archives - Page 21 of 22

Epilepsy Is More Than Just Seizures

If you ask someone what they think of when they hear the word “epilepsy”, they will most likely answer “seizures”. That certainly would have been my answer if you had asked me even just three months ago.

Now, though, the seizures only scratch the surface.. They’re the easiest for us to identify and to label and put in to a box. What is harder to identify and harder to quantify are the many other symptoms and side effects of the seizures and of the medicines that are running rampant inside of his body, and for which we have no adequate words to describe to anyone else, never mind to him.

How do you explain to a five year old why he gets so sad that he wants to run away, hide, and cry? How do you explain why he can’t control his emotions and why we have to hold him down for an hour or more before bed when his impulses take over and he is hitting, and spitting, and biting? How do you explain why he can’t control his body, why he is always so tired and why he constantly trips and falls when he used to be so agile?

I can’t give him a reason when he asks why this is happening. I can’t fix him when he asks me to make him better. I can only tell him over and over that I love him when I am holding him down until his anger passes. I can only try to make those moments when he isn’t too tired to function feel a little more normal.

Resisting The Inevitable

When my son’s epilepsy diagnosis came, it came with a list of changes that we needed to make to our lifestyle. No more baths without supervision, no more swimming without someone else in the pool, and no bunk beds. The first two changes were precautions to prevent drowning, and the last one was to prevent falling out of bed during or after a seizure.

A few months before his diagnosis, to help ease the transition for my son with our move from Colorado to Philadelphia, we sprung for a new bedroom set for his new room. The bed? A loft bed with a slide, clearly not on the epilepsy-friendly list.

We really struggled with what to do. The diagnosis was new, and it was bad enough that our son was having seizures, we didn’t want this also to mean we had to start taking stuff away from him and changing his environment. Besides, we told ourselves, the medicine was doing its job, and he wasn’t having seizures anymore. So we let him keep his bed.

As it turned out, his seizures weren’t under control. They were masked by the medicine and they evolved, happening early in the morning and shortly after he woke up…both times when having a bed that was five feet off the ground posed a serious danger. After our latest hospital stay, my wife and I finally had the conversation that we had been putting off and made the decision to create a safer environment for our son.

Instead of ordering a new bed, we talked to our son about converting his fire station loft bedroom in to a ground level hockey bedroom and he was thankfully on board. Most of the time, he handles so much of this better than I do, and my fears about him resisting these changes or feeling like his epilepsy were going to ruin his life proved a much easier conversation, especially when we talked to him about the silver linings and making him a part of the process. He will get to help pick his sheets and blankets with his favorite teams. With the slide removed, there is more room to play hockey. And, probably most importantly, lowering the bed is the next step in to him being able to sleep in his own room again.

The lesson is that safety should always come first, and that there are ways to make these transitions less traumatic. It just takes a little creativity and a lot of love, which our family has in spades.

Oh, and by “converting” his bed, I broke out the circular saw…

…and cut the legs down on his bad to a safer height.

I wish taking away his seizures were as easy.

Break On Through

The house had been quiet at night since we left the hospital. My wife and son had been sleeping on our small bed while I slept on the couch in the living room. This temporary living arrangement was brought on by necessity since his elevated loft bed in the basement was not compatible with our new reality, and the stairs down to his room posed a hazard should he have a seizure and try to navigate his way up to our room in the middle of the night.

The first few nights back home, there was little sleep as we waited to see how our son would do. We’d been in this cycle where we would leave the hospital armed with a new medicine and no seizures only to find ourselves back in the hospital a few days later when the seizures returned in force.

But after a week without an incident, in a house filled with silence, my body was finally able to relax. The slender couch with the small “Home Sweet Home” decorative pillow (that I know I’m not supposed to use) were a welcome relief from the uncomfortable hospital accommodations.

With so many quiet nights in a row, my brain resisted reacting to the alarm bell my ears heard echoing through the halls, the unmistakable sound bellowing from my son’s vocal chords that announced the arrival of another seizure . I rolled off the couch, landed on my feet, and raced to the bedroom at the back of our apartment. I caught a glance at the digital clock on the microwave as I passed. It read 5:32, and I noted it so that we could measure the duration of the seizure, the mechanics of counting and measuring seizures having become rote.

By the time I reached the bedroom, the thankfully short seizure was already over and my wife was comforting my son. I laid with them for awhile before returning to the couch. This time, my body refused to relax, and I nervously stayed alert to listen for another seizure, which also came later the same morning, followed by another cluster that required the use of the rescue medicines before they dissipated.

They call these “break through” seizures because they occur in spite of the use of anticonvulsants or, in our case, three anticonvulsants and countless prayers. We’ve experienced enough of them to know what we are supposed to do, which is as terrible as it sounds. But we stayed home and, given our year so far, that is a marked improvement.