epilepsy Archives - Page 35 of 84

Some Other Beginning’s End

It’s already February.

It feels like we skipped January, which I wouldn’t have minded.

January sets the tone for the year. We treat it as a fresh start. We make resolutions to change things about ourselves that we want to improve. And then we endeavor to build up enough momentum to carry those changes through the year and through our lives.

If we’re still exercising in February, or eating better, or not drinking, then there is a better chance that we’ll be doing the same in March and in December. But, inevitably, by the second month of the year, the gym is starting to thin out. There is a pint or two of ice cream in the freezer and a box of wine on the counter.

I was hoping for a better January. My son had VNS surgery in December. While I knew it would take months or a year to see if it would work, January felt so much worse. We often counted the time between seizures in hours, not days. We were reminded every five minutes when the VNS went off and tickled my son’s throat and changed his voice that we were still at war with a relentless enemy that takes and takes from him, leaving him tired and insecure and behind.

January didn’t even give us that first, hopeful week. It strapped us to the couch, shoved a ladle full of ice cream into our mouth and poured the box of wine down our throat on the first day. “Just so you don’t get any ideas that this year is going to be different or better, ” January said, smoking a cigarette with its foot on my chest.

Seneca said, “every new beginning comes from some other beginning’s end.” I’m trying to find a new beginning in all of this. But to do that, I need to find an end, but there never seems to be one. We turn the page of the month, but it’s the same calendar with the same theme that has been hanging on the wall for the last five years.

The days of the month are color-coded to capture those when my son had a seizure. January is covered with the little yellow squares of activity. February isn’t starting out any better. It’s hard to look at the calendar and imagine that it is ever going to end or that we’re going to get that new beginning we’ve been hoping for.

But Seneca also said, “Begin at once to live, and count each separate day as a separate life.” Maybe I’m thinking too “big picture”. I’m trying to apply “before” and “after” to months and years instead of to each day. Each day when my son has a seizure ends and a new day begins without one. Each day has the potential to be the day that he doesn’t have a seizure. Each day has the potential to be the one when things begin to get better.

If it turns out to not be that day, I’ll try to remember that that day will end, too. And when it does, a new one will begin. I’ll try, but it won’t be easy. Because even though I’m trying to be grateful for each day and to see its potential, I’m still longing for the day when things finally get better for my son. Because even if it’s not possible, that’s the new beginning I still really want. But for that to happen, these relentless seizures and side effects need to end.

The Sleepover

A few weeks ago, my wife and I spent our first night away together since my son was born. Individually, we’ve been away. I’ve gone on work trips, and my wife has gone to visit family. But we’ve never both been gone for the night and let someone else watch our son.

In some ways, it wasn’t practical. We don’t have family that lives near us, so leaving him at grandma’s house wasn’t an option. But there is also the reality that our son has seizures almost every night. Spending the night isn’t just about giving him a place to sleep. It’s an active task that involves monitoring him and responding to seizures.

Our son is never alone. Even sleeping in his bed, we have a camera pointing at him that I watch all night long. When he is in his room playing, we keep a cautious ear listening to what is going on. He receives individual attention at school, and his nanny is substituting for us when we aren’t there.

That level of involvement is not something that transfers well to someone unaccustomed to that level of care. It’s not something that lends itself to people lining up to take on the responsibility. It’s our every day, but it’s not theirs. I can imagine the conversation with the parents would go something like this:

As you know, our son has epilepsy. And it’s very likely that he’s going to have a seizure really early in the morning. Probably more than one. The seizures are likely going to wake and frighten your child. And you’ll need to help my son reorient to the world as he comes out of it and make sure he doesn’t fall out of the bed or try to walk around and fall down your stairs.

[silence]

If the seizure lasts too long, his rescue medicine is in his overnight bag. The good news is that we haven’t had to use it in a while. The bad news is the delivery mechanism.

[silence]

Also, you’ll need to make sure he doesn’t eat or drink anything we don’t send with him. He’s on a medical diet and if he eats anything else he could start having seizures.

[silence]

Oh, and don’t let him stay up too late. The more tired he is, the more likely his is to have seizures.

[silence]

His medicine is also in his bag. Make sure he takes all of his pills because if he misses any…you guessed it, more seizures.

[silence]

Other than that and, I guess, his depression and behavioral side effects of his medicine, I think you’re all set. Ok, goodnight!

[overwhelming silence]

I couldn’t burden someone with that responsibility because nothing could prepare them in one night for what has taken us years to adapt to. But I would also spend the night worrying and wondering. It wouldn’t have been a good night for anyone involved.

I really struggle with the idea that no one else can or will want to take care of our son. But at the same time, I find reasons why no one else should. They don’t know my son. We can’t prepare them for what it is like. What if something happened?

In the end, our nanny provided the perfect opportunity. She has been working with our son for over a year. She’s seen his seizures during his nap, and she’s helped him manage his behavior and emotions. We trust her to keep him safe. When she agreed to an overnight stay, it felt right.

Even though it was only one night, it opened my eyes to a new possibility. I’m not going to say that I still didn’t worry or wonder. But coming from a place where I didn’t think it would be possible at all, that first night was huge. It may not have addressed all my fears about the future, but it was a good first step.

The Ketogenic Diet Is A Family Affair

On the morning of New Years Eve, my wife and I got a head start on our healthy new year resolution and went for a run. We left our son sitting on the couch watching his iPad with my mother-in-law sleeping in the next room.

Over the past few months, my son (who is on the ketogenic diet for epilepsy) has been sneaking food, so we took the precaution of hiding any tempting holiday treats on top of the refrigerator. Before we left, I looked my son in the eye and told him that we would be right back and to stay on the couch. He nodded in agreement and nestled comfortably in to the corner with his blanked.

When we returned, he was still on the couch. When I asked him, he confirmed that he hadn’t moved but he wouldn’t look at me when he answered. I glanced in to the kitchen and noticed that the step stool that we have under the counter had been moved. On top of the fridge, I could see empty containers of leftover deserts.

I looked back at my son and his head was down. “It was me, ” he said softly.

There has been a lot of this lately. He’ll sneak crackers from the pantry or leftover spaghetti from the fridge. A few weeks ago, he took a bite out of a tomato at a grocery store.

I am both heartbroken and frustrated. I’m heartbroken because of how restrictive the diet is for a 9-year old boy who sees the people around him eating whatever they want. As his father, I’m frustrated because his initial instinct is to lie and the foundation of our family is built on love and honesty. But I’m also frustrated because I know I have a hand in making the environment tempting for him by keeping unhealthy food in the house when the stakes are so high. Where a typical kid would just get an upset stomach from eating too many cookies, my son falls out of ketosis which could lead to an increase in seizures.

He’s been on the diet for more than 3 years. That’s a long time, and these recent incidents of sneaking food are starting to grind down my resolve. I’ve gone from thinking that the diet partly helped saved my son’s life to questioning whether it helped at all or if he still needs to be on it with his new medications and his VNS. I’m collecting evidence to support my theory but deep down I know it’s tainted with confirmation bias because I don’t want the diet to be working.

I want there to be an easy way out. It’s would be easier if there were a clear indicator that the diet was making a difference. It would be easier to stop the diet to remove the strain we are feeling instead of figuring out what other modifications we can do to make the diet more tolerable. But like so many things that come with an epilepsy diagnosis, it’s not that easy. It’s also not easy as a parent to feel like your child is missing out on something when his life is already so hard.

But there are things we can do to not make it harder. We can make better dietary choices ourselves and not have the tempting food in the house. We can make a big deal out of eating better and stressing the importance of diet for our health, the same way his diet is important to his health. We can be his parents, and take on some of the burden ourselves to alleviate some of his. Because if we can’t make it all go away, we should at least show that we are in it together.