Sunday, August 11, 2013

Dizzy With Worry

I paged the on-call neurologist yesterday. I didn't want to wait until Monday to hear B's EEG results, and I had a great friend (see her blog here) give me the push I needed to make the call (sometimes I'm way too nice, and I really have to change that, in all aspects of my life).

The results of the EEG? Abnormal, with seizure activity. Not surprising, I suppose, but I was holding on to that last shred of hope that this was all some giant fluke. The neurologist apologized profusely for no one getting back to me Friday, and told me he would make sure our actual doctor called me first thing Monday (if she doesn't, she's getting a page).

So, what does this all mean? Well, first and foremost it means I can't leave Ben alone. He had two big seizures in a week, and now I feel like we're just waiting for number three. The medication he is on won't work right away, and the dosage he is on is so low, I doubt it's useful at this point. It takes two months to reach the full dosage, so from now until then, I'll be sitting on pins and needles just waiting. He pretty much has to be with someone at all times, which he hates, but is necessary.

This week B is supposed to go back to camp. He was only there two days last week, because of doctors appointments and seizure #2. He really, really wants to go back, they are fine with having him there, but I am 100% not fine with sending him. Camp is a long day, from 9am-4:45pm. We are in the car at 8:10, and don't get home til around 5:30. My brain is screaming at me that the chances of him having a seizure at camp is too great. While I know they are perfectly capable of handing it, should it happen, I don't want it to happen when I'm 45 minutes away, and he's with people who are not me. I haven't made any final decisions, but it's going to take superhuman strength to let him go...

A big part of me says until we have seizure control, and really know what's going on, it's irresponsible to send B anywhere. I mean, even today, a gorgeous Sunday where we have no plans and could do whatever want, I find myself just staying home because, what if. 

Two seizures in eight days. Abnormal EEG, showing seizure activity, even when he looks fine. What if seizure #3 is just around the corner?

Yes, we are not the first family to deal with this, but it is my first time dealing with it. Things have changed so much since last week, when we thought (hoped) the whole thing was just a one time deal. I feel like I'm armed with very little information, and that doesn't feel great. The sooner we can get another neurology appointment, the better.

This is a big change for our family. It's going to take a while to work through it all, and get to a place where I'm comfortable even going to the bathroom without eyes on B. Where I don't wake up and go to bed scared.

Where I find peace with our new, new normal.


  1. Any nurses or doctors on staff at camp? I can totally understand your reservations about sending him. Poor guy--- it must be scary for him. My kiddo has the same shirt, by the way. Praying for you. Remember when all your blog posts were about K?