Justin, Junior

Thursday, April 21, 2011

It Could Be Worse, I Guess...

...and, conversely, of course, it could be better, too.

Hello, Mother!
  One evening in March, as I was drying my son off after his bath, he did this weird eye thing, where he deliberately blinked and then rolled his eyes back into his head. He did it twice. I thought it was weird, but hey, my kid’s weird, and I honestly thought maybe he had gotten water in his eyes. And then, a few days later, he did it again. And as dumb as it seems, in retrospect, I thought, “Nerd. He’s discovered how to roll his eyes.”

But then he did it a third time. He was playing with a push toy - you know, the really annoying one that has all those plastic balls in it and makes that impossibly loud popping sound. He was pushing it around, and then he stopped, blinked his eyes once, very deliberately, and then his eyes rolled back into his head again. He repeated this three more times, and I called his father, and then his pediatrician.

His pediatrician referred us to a pediatric neurologist, and we had to wait more than a month to see him. The appointment was brief, and pretty harsh: Epilepsy.

I have spent the past month telling myself that I was probably going to hear that. And that I would be okay with it. That most kids outgrow epilepsy (in fact, the neurologist informed me that 80% of kids outgrow epilepsy when it manifests at this young of an age). That, as far as epilepsy goes, this whole blinking-eye-roll thing is pretty mild. He doesn’t convulse. He doesn’t asphyxiate or turn blue.

But…it was still hard not to cry when the neurologist said it.

Of course, as the doctor was questioning me about family medical history in general and Junior’s medical history in particular - for example, things like had my son ever had a head injury - Junior was walking around, banging his head against anything and everything. For whatever reason, he seemed to have forgotten how to duck, and insisted on trying to walk underneath the sink multiple times, hitting his head with each attempt, and I’m thinking, My God, how often does he hit his head?

“No, Doctor. No head injury.” Bang. Jesus.

So we have an MRI scheduled for the 10th, to “rule out any underlying brain abnormalities” that may be causing this. If there were ever words calculated to scare the hell out of any parent, those would be towards the top of the list. Of course, his development has been normal and the doctor said it was pretty routine…

But nothing about this seems routine to me. My baby has to be sedated for this procedure. I hate sedation. I’m confused and incredibly nauseated when I come out of it. I don’t want my boy to have to go through that. I don’t want there to be one minute where he’s left without me, surrounded by people he doesn’t know and bright lights and the thought of him being scared for even one instant upsets me far worse than the diagnosis of epilepsy does.

The reasonable part of me knows he’s going to be fine. He’s a healthy little boy, and surely if there were underlying brain abnormalities or damage, then I would know about it. He is smart and active and he is with me all the time.  I'm his mom.  I would know.  The fact that these seizures (there, I did it - I used the “S” word instead of referring to them as “episodes,” which is what I have been doing these past months) are triggered only when he is tired (they always happen before nap or bedtime) points strongly in the direction of epilepsy rather than anything else.

And the reasonable part of me also says that epilepsy is no big deal. We can handle it. Of course, we can handle it. Even if we couldn’t handle it, we would damn well find a way to handle it. That’s what parents do. This isn’t life altering. It’s a matter of keeping him off of stairs and away from swimming pools and playground equipment when he’s tired, so that if he seizes, he won’t get hurt. It’s a matter of learning what to do if the seizures ever do escalate. It’s five more minutes of instruction before leaving him with a sitter. When the neurologist asked how I felt about medicating him, I declined without hesitation. At this point, I feel that treating this with medication is far more detrimental than the seizures. So, he blinks weird and rolls his eyes funny and just sort of checks out for 10 to 15 seconds sometimes when he’s tired. It’s no big deal.

But oh, that mom part of me, that bone-deep, protective, howling mom-part of me feels like this is a big deal. I’m the mom who thinks a damn stomach bug is a big deal. This is my baby, my little boy, I would straight punch someone in the face for looking at him wrong, I would give him my heart if he needed it. I let him have the last M & M, the only Oreo, the final bite of ice cream every time, and his brain is misfiring on some level and I’m his mom and I can’t fix it. Why the fuck didn’t I become a neurologist? His neurologist has weird hair and cowboy boots. I have weird hair and cowboy boots. I should have become a neurologist.

OK. Mom freak-out complete. Moving on.

So, that’s where we’re at right now. MRI first, and when that comes back normal (because it will, because it has to), we’ll be scheduled for an EEG, where they’ll use some different techniques (flashing lights, hyperventilation) in order to try to induce a seizure so the neurologist can try to see what type of epilepsy Junior may have. And then…that’s it.

Writing this has actually made me feel better. There are things much worse and much scarier than epilepsy. And in all honesty, Junior has had cases of diarrhea that has had more of a profound impact on our daily life than his seizures do. I’m back to where I was a month ago, when I realized that the testing is more worrisome than the actual diagnosis. After all, there’s no learning how to “handle” his seizures - we’re already handling them. I will continue to do what I’ve been doing: trying to minimize his trigger, which, at this point, simply seems to be sleepiness. Easy enough…Lord knows we love naptime in the Kilgore household.

And I will get my little guy through these stupid tests with plenty of hugs and songs and kisses and maybe a vanilla ice cream cone from Sonic. And my husband will get me through these stupid tests with plenty of hugs and songs and kisses and maybe a vanilla ice cream cone from Sonic.


  1. Balls, friend. That's all I have right now...just...balls. That and a million prayers and all of my ounces of positive energy zapping in your direction!

  2. My nephew had this issue briefly and outgrew it. Praying for the same for your son.

    Jessica M.

  3. I don't really know what to say Samantha & Justin. JJ has been a blessing to you & I. I haven't seen much of him but I oh so do keep up day to day. He has a wonderful Mother & father & I pray he will grow out of his epilepsy. I know even with prayer's & encouragement it is so scary for both of you. God gave you so many wonderful blessings, you have each other & a beautiful, vibrant little boy , who has touched all our hearts, and you have the gift to share & give of yourself. There is no greater love than that of a mother & father, & it is this love that gives you the strength & power to protect him. I pray with all my heart & soul, he be healed in Jesus name Amen

  4. I think you need a second opinion....