epilepsy Archives - Page 84 of 89

Some Days…

Some days, the ball hits you in the face.

Some days, you hit a home run.

Some days, I feel like all I post are sad, depressing stories. And maybe I do. Our lives are full of a lot of that now. But we’ve gone from a lot of bad days, to fewer bad days as a whole, and to just bad parts of days. We’ve even had our first two good days (defined as a) no seizures b) not having to hold him down and c) no screaming) since February.

Even on the days with bad stuff, we’ve had some good stuff, too. My son has met some amazing people at the children’s hospital, and those people care for him very much, and make him feel special when they see him. He’s even participated in a fashion show and a YouTube video while he was there.

In the last few weeks, he’s gotten off multiple medicines and transitioned to a very difficult diet that has helped with his seizures. He’s fought through 5 seizures during a teeball game and multiple attempts to bring him home only to get three hits and score twice. He’s met a football player, a professional ultimate frisbee team (that’s a thing), and super heroes. He’s shown himself to be stronger and braver than I could even imagine.

Some days, life seems hard, and hopeless, and unfair.

Some days, there are specks of light poking through the darkness.

And we’re grateful for each and every one of them.

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.

Two Steps Forward, Eight Miles Back

We’re back on the neurology floor, a week after starting the ketogenic diet. While we are seeing a decrease in the number of seizures, which we hope are attributable to the keto diet, we’re not seeing any progress in his abnormal behavior.

I can’t say that I blame him. Having seizures isn’t fun. Always being tired isn’t fun. Although not going to school probably sounds like fun, it isn’t when you don’t get to see your friends and have to hang around a stressed mom and dad all day long. And now he has to drink oil and cream with every meal, a far cry from pizza and cheeseburgers. But it’s more than that. It’s not an occasional temper tantrum that comes with being five, it’s deceptive, and manipulative, and angry. He’s trying to hurt us and himself, and sometimes he doesn’t remember doing it. That’s what brought us back to neurology.

After a day of monitoring, the good news is that the outbursts don’t seem to correlate to any seizures. The bad news is that they don’t correlate to anything other than being tired, so we’re left guessing whether it is a side effect of the medication or some remnant left over from when his seizures were really bad that altered his core.

Not knowing is always the hardest part. Not knowing when it involves your five year old makes it all just unbearable. It’s tiring, and frustrating, and scary. While I haven’t given up on the long term goal of him playing in the NHL, the reality is that we’re much more focused on the day-to-day. Whether the diet works for his seizures or not, what will his quality of life look like if his brain can’t keep a lid on his emotions? What will it look like if he’s constantly tired, or if his parents are constantly tired and on edge?

There is so much about this that falls outside of the realm of possibility that I thought possible as a life for my son. I’m really trying to focus on the positive, and to be grateful for the nuggets of goodness that we find along the way even though many days, it feels like we take two steps forward, only to find ourselves eight miles back.