seizures Archives - Page 21 of 23

A Sound To Break The Silence

For the past eight nights, our house has been silent. Our son has gone to bed and woken up without a seizure, without a sound. For the last few months, he has a string of seizures in the early morning, echoing their call throughout the house. But for just over a week, shortly after starting the ketogenic diet, his seizures had stopped, and I had just begun to forget that sound. I had just begun to stop expecting that sound.

But then, a day after he moved back in to his own bedroom, a sound carried up the stairs and down the hall. At first, I thought it was my wife singing in the bedroom, or the call of the fans rumbling through the hockey game on the television. But after my wife shut the door, and after I muted the television, the sound once again filled the room. Down in his room, our son was having more seizures.

epilepsy seizure

I got ready for bed and headed down to his room. Our monitors are still not here, and as much as our bodies resent the lack of sleep that came with having him staying in our bed, I wasn’t ready to trust that his seizures were temporary and that they wouldn’t cluster. So I found a space in the corner of his twin bed, and I laid with my son until he fell asleep. I listened as he had another handful of seizures, and another few in the early morning.

Although we are still very much struggling with some lingering issues during the day, I was eager to return to a quiet house at night and to a restful sleep. I was ready to assume that the noise I heard at night was my wife watching some terrible show on CBS or a drunken neighbor stumbling home after a night out. But for now, I must still keep that part of my brain active that can pick up every sound and distinguish Madam Secretary from a myoclonic seizure, from knowing which is damaging a brain in my house and which is just a seizure.

There are days like today when I wonder if I will ever sleep soundly again. I wonder whether I will over not worry that every sound I hear is my son having a seizure and whether I need to rush down to his room to make sure he has recovered. Living on the edge, all day and all night long, is taking a toll.

There is so much uncertainty, so much to react to, so much to be cautious about. But I am hopeful for the day when the worst thing that I will hear at night is another show on CBS.

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.