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.

The Worrier (not Warrior) Mom.

I don't want to be that person. That person who acts like she's the first mother whose child has ever had a seizure. Like the (super annoying) women who act like no one has ever been pregnant before them? Yeah, that's not me. B having a grand mal seizure was, is, a big deal to me, but I know there are people who deal with this kind of thing every day. Who deal with worse. I am big on putting stuff in perspective, so I just wanted to get that out there.

Of course, this is my blog, and in my tiny corner of the universe, I'm scared. Scared that B's seizure wasn't just a fluke. Scared that his sleep deprived EEG will show something. Scared that his life will be limited in some way because of epilepsy. I'm his mom, it's almost like the worry is out of my control.

We met with a neurologist yesterday, who asked the same questions as the ER doctors and pediatrician. Who really wanted there to be a trigger. Sleep deprivation? Dehydration? Illness.

And so badly I wanted to tell them there was. A simple explanation for why my son's brain suddenly went haywire. The, some kids just have one seizure, never to have one again, loses a bit of weight when the look on the doctor's face doesn't match her words.

It was two hours of a lot of talking, and a little neurological testing (jumping on one foot, checking reflexes, etc).

The doctor told me that eventually I will relax, allowing B to sleep alone in his own bed. I'm sure she's right, although last night was not that night. Maybe when the image of him on the floor begins to fade, or not to hurt so badly, although more likely I will just force myself to let go. He likes his own space, his own room. My husband would like to come back to bed.

I am sure there are many parents who would deal with this better. I'm sure there are those who sit in judgement of me for being such a worrier. People sit in judgement of everything, these days. I am sure there are those who think my new found hermit-ness is ridiculous, too. But, it is what it is. We all deal with things differently. That's just reality.

Today, though, I shall focus on the fact that B gets to finally start camp. A camp I am 100% confident in, when it comes to caring for my child. He'll get to have fun, without helicopter mom watching his every move. Will I be tied up in knots the every day when he's gone? Maybe. But I'm his mom...that's just what moms do.