lifestyle Archives - Page 34 of 37

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.

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 [easyazon_link identifier=”B00CXEXSUU” locale=”US” tag=”lightningbuddha-20″]Perfection[/easyazon_link].

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.

[easyazon_infoblock align=”center” identifier=”B00CXEXSUU” locale=”US” tag=”epilepsydad-20″]

A Night (Or, At Least, A Few Hours) On The Town

Last night, my wife and I we were able to go on our first proper date (it was her birthday) since we moved to Philadelphia and since our family’s journey with epilepsy began. It was only a few hours on the town, but it came after many months of struggle.

One of the challenges that we’ve had has been to find someone to help take care of our son during the day. Up until now, it’s been primarily my wife, with me filling in after work and on the weekends. But my wife has to deal with the brunt of the behavior every day, all day, as well as struggle to find the time and attention to also give to her business, which she can’t do very often because our son needs near constant attention. And so she has bore the brunt of this for our family, sacrificed much of herself and her business, since it started.

As parents, there was no training for how to navigate this new world. We were simply thrust in to it, as was our son. We’re trying to manage his epilepsy and control and direct his behavior, while at the same time simply trying to wrap our head around what is happening and why it is happening, two questions to which we still do not have answers. Like so many families that are going through the same thing, whether it’s for epilepsy or for another condition, the relentless struggle to simply manage the day-to-day is exhausting, and frustrating, and constant. We have both broken many times, only to go to bed, wake up, and do it all over again.

Back when we lived in Colorado, we got breaks, we had jobs that we could focus on, and we went on dates. We had a few different babysitters, some as young as 15 because they only needed to play with our son and put him to bed. But now, a teenager is no more equipped for the situation than we were when we started. We needed someone who could handle the seizures, and keep him safe during an outburst, and that was trained, and capable, and able to handle the stress of working with a “special needs” kid.

While we need someone with a particular set of skills (cue Liam Neeson), our son’s condition didn’t qualify as a medical necessity that required a nurse so, again like many other families, we’re left in the middle…not a medical necessity but more than a parent can handle. If you need assistance, you need to find it yourself and pay for it yourself, too. Both of those obstacles leave many people helpless, in every sense of the word.

We’re very fortunate that we found an amazing caregiver that is patient and that works academically with our son since he hasn’t been able to attend school. But she can only come for a set number of hours a week…enough to help out and give my wife a chance to breathe, but not enough for her to actually catch her breath. We’re grateful the help and for the opportunity to go out for my wife’s birthday, especially since we know that there are other families that are not as lucky.