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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.

My Typical Day As A Parent Of A Child With Epilepsy

My typical day starts around 2 AM. We’re sharing a bed now, my wife, my son and I, because we’re not ready to let our son be alone in his room a floor away. I’m usually awoken by my son having a myoclonic seizure, a brief expression of sound, a jerk, enough to wake me, but he usually returns right to sleep. I’ll lay awake and wait for the next seizure, which may or may not come immediately. Eventually, I drift back to sleep, only to repeat the process a few more times during the early morning until my son eventually wakes up between 7 and 8 AM.

Once he wakes up, the next hour is a mix of listening for seizures and trying to judge his temperament to see if we’re going to have a good day or a not-so-good day, in which case I’ll hang around a bit more before I go to work.

When I do go to work, I’m always on edge, waiting for the phone to ring. I check in constantly with my wife to see how my son is doing. How are his seizures? How is his behavior? Sometimes, she calls me. Sometimes, I have to go home.

After work, if it was a good day, we will hang out as a family and have dinner. We’ll play hockey, or catch, or Xbox, and we’ll do normal family stuff. If it wasn’t, then I take over for my wife so she can get a break, and we’ll spend the rest of the night trying to just make it to bedtime.

Around 7 PM, we start preparing for bedtime. Lately, we give him his calming medicine and a dose of melatonin, then around 7:30 we start the routine of brushing his teeth, washing his face, giving him the rest of his meds, and reading a story while listening to Mozart. If he’s tired enough, he will fall asleep and we count our blessings. If he doesn’t, we spend the next hour or two holding him down and trying to calm him down until he eventually falls asleep.

Once he is down, my wife and I might watch a show or spend some time together, but we’re always still on edge, checking the camera in the room at every sound to see if it’s him getting up again, to see if we need to go in there and repeat the calming or the holding down. If we get to finish our show, we’ll head in to bed, grateful for another day, and hoping the next day will be better.

There are a million similar, and a million different stories of how families are dealing with epileptic children. Many of us spend all day counting seizures and trying to keep our kids safe. Some of us are dealing with anger and impulse issues. Others are dealing with kids that might not be able to walk, or talk, or move, on top of having seizures. We’ve met some of these families, and we all have our own stories. The seizures might be a common thread, but as each of our stories reveal, epilepsy is so much more than just seizures, and living with epilepsy is something that impacts the entire family.

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.