Really, Who Needs Sleep Anyway?

If you follow me on Twitter (@epilepsy_dad) or Facebook, you might have seen this update recently:

Last night was first night in months where we didn’t get up even once. No seizures that we heard. No nightmares. No insomnia from the meds.

The bags under my eyes, however, are a telling sign that the status update represented an anomaly. Most nights, my wife and I sleep just on the edge of consciousness. The doors between our room and our son’s room are open so that we can hear any sound that he makes. My phone is on my nightstand with the baby monitor app running so we can hear and see him while he sleeps. We’re on watchful guard listening for a seizure, or for him calling out or crying because of a bad dream, or because he just doesn’t want to be alone.

epilepsy sleep tired seizure

On any given night, we might get up between 3 and 10 times, which means we only get a few hours of consecutive sleep at a time. It’s been like this for months. Our informal system has been that whichever one of us that is less asleep will get up, allowing the other to let their guard down a little more and drift a little deeper into sleep. It might only be a few minutes or it might be an hour, but either way, my body welcomes the break and release from constant tension.

When you have a child with epilepsy, especially if their seizures aren’t fully under control, a good night’s sleep is a luxury. Seizures don’t stay in a nice convenient box or stick to a schedule. They happen when they want to happen and, for many people including my son, that can be at night and during the lighter stages of sleep. The kicker is that those times are also when the body and mind desperately want to rest and recuperate and, since the seizures equate to an unrestful sleep, he’s left more tired. When he is overly tired, he’s more likely to have seizures during the day, as well.

I feel like I want to end every post with some variation of “epilepsy is more than just seizures” because it’s the overall theme of our journey so far. Seizures are a part of epilepsy, but there is so much more. There is a lack of sleep. There is a being on constant alert. There is dealing with the stigma, and the uncertainty, and the lack of understanding. There is the inability to explain any of it, to him, to ourselves, and to the outside world. There’s so much to living with epilepsy that it would take too long to list out even a fraction of the ways that it impacts our lives. But right now, my son has gone to bed, and it’s time for me to get whatever bits of sleep that I can. I will hope for another night without one, but I will still listen for his call…a call that I will always and forever answer.

 

Easier, But Not Easy

We’re two months in to the ketogenic diet. The doctors say that it’s working. We’ve been able to go down on meds without a significant increase in seizures, although the reduction was more due to my son being toxic on the meds rather than the gradual weaning of meds that sometimes follows the diet. But we also haven’t been admitted to the hospital in months, which admittedly is a pretty low bar.

His behavior is better, but it’s still bad. There is less screaming, and the outbursts don’t last as long, but they still happen. And his impulse control is still nonexistent. We’ve had to add a chain lock to our front door to prevent him front running out on the street, which he did. We can still see it in his eyes, when his brain gives up on making any decision and following natural impulses that, for a 5-year-old, involve flipping, and running, and hitting.

It’s still hard to look at him and to see him struggle. It’s still hard to do something fun only to have it end with a seizure because his body gets too tired to prevent it. This picture was taken at a festival in the park next to our house. About 30 minutes after it was taken, he was on the ground having a seizure, concerned bystanders offering to help.

easier but not easy epilepsy seizure ketogenic diet

In the past month, we’ve gotten help to come during the day. We’re also getting additional services through the hospital and through the state. We are getting better at managing. Managing his routine. Managing his seizures. Managing his behavior. The help and structure have made the day-to-day easier.

Easier, but not easy.

Like I imagine so many other families are dealing with, epilepsy has its own gravity that forces everyone to exert much more energy to keep moving. Every step is harder to take. Everything takes longer. Even the simplest things are exhausting. I wish I could grab my wife and son, strap on some rocket boosters, and break free from the unrelenting pull of gravity, but so far, we continued to get pulled back by more seizures or other complications.

Easier, but not easy.

There are families that don’t get easier or easy, and I’m grateful for the progress that we have made and for the support that we continue to receive. I’m still hopeful that all this will somehow, magically go away and that we won’t talk about the year when my son was five and he had all those seizures. We’ll skip ahead from his Disney World fifth birthday party to whatever we do for him when he’s six, and forget everything in between. Short of a magic wand to make it go away, I wish I had a remote control to fast forward to that time.

That would be easy.

 

Perfection (The Game, Not The Goal) For Fine Motor Rehab

During his hospital stay in February, my son had a bad reaction to one of his anti-seizure medicines and developed ataxia, which is the loss of full control of bodily movements. For two days, he couldn’t walk, or talk, or hold his head up. We had to carry him to the restroom and feed him, which was a shock considering he was ice skating only the week before. We didn’t know if this was a permanent situation or if he would ever recover.

Fortunately, by the third day he started to move again, although he was incredibly shaky. His gross and fine motor skills were both severely impacted, and we watched through our tears to see him struggle to hold himself up or hold a spoon or form a thought. While we were still in the hospital, he started occupational therapy, physical therapy, and speech therapy to try to rebuild the skills that were damaged. By the time we left the hospital a few weeks later, he was functioning at about 50% his pre-admission level both mentally and physically.

Since then, he has continued his rehabilitation and, while he is still wobbly and has impulse and attention difficulties, he is better than he was. The therapists at our hospital have been amazing, and they’ve incorporated games as a way to engage my son for rehab without realizing that it what he’s doing. Taking a cue from his occupational therapist, this week we’ve been playing a lot of Perfection.

epilepsy rehab ot occupational therapy perfection game ataxia

The game helps develop two different skills. First, the fine motor control required to grab the stem of each piece and navigate the shape in to the board is challenging. I watch as he tries to twist the stem with his fingers to rotate it to fit, dropping it many times but diligently picking it back up. When he rushes or when his ataxia is worse, it’s helping him really focus on muscle control.

Cognitively, he’s having to identify the shape and scan the board to find the match, which can be difficult because there shapes that are similar to each other. He also needs to align the shapes, so his mind has to tell his fingers which way to rotate the shape. Oh, and he’s doing it against the clock.

For now, we set simple goals, just trying to beat his score from the last time. Sometimes he does, other times he can’t. But we encourage him to keep trying because every time he plays, he’s exercising those muscles and pathways that were damaged, which is what they need the most.