Jakob's Journal

Ok. I really wanted to do an entry entitled "2006, A Year in Review"...and I will, but there's a more pressing matter that I feel the need to write about first......

Jakob may be having seizures. He's having the tests done in mid-February so we'll know more then. So that's five weeks until the test, 6 weeks before we know the results. I've been suffering from occasional nausea.

Jakob was scheduled to have one short test in December. I'd made the appointment as a precautionary measure after hearing some stories about other kids like Jakob. We ended up having to cancel that appointment...Jakob was sick and his sleep was all messed up. It wouldn't have been pretty. And since I really hadn't seen anything that led me to suspect any seizures, I wasn't that worried about waiting for the longer test.

Over the past couple of weeks, while I was on vacation and with Jakob most of the day, I noticed a few different behaviors...a lot of eye rubbing, blinking, awkward mouth movements. It was happening so fast, I just wrote it off to something else...maybe a stim, a hair was in his eye, it's his sinuses since he's sick. I had a reasonable explanation for all of it.

But then...while he was in OT, his therapist saw something that she believed may have been a seizure. Jakob had just gotten off a swing and was walking with her when he stopped. He was blinking fast, flapping his jaw and wringing his fists. It lasted 3-5 seconds, he stopped and leaned against her for a moment and then did it again for another 3-5 seconds. She came upstairs and utterred one of my favorite phrases, "Now Jenn, I don't want you to panic"...(yeah, right). She told me the story and I calmly whipsered my favorite 4-letter word...

Since that happened, I'm watching him like a hawk and remembering stuff from all the way back when he was an infant. Memories just flash...I remember when he was under a year old...I can't remember if he was sick or if it was right after immunizations....but I was holding him and he shiverred...for just a second. Then he did it one more time. I remember it freaking me out. But everything freaked me out when he was that little and it was as if he just got a chill. I mean, I do that. Sometimes, outa nowhere, I'll have a chill run up my spine. So, I wrote it off to that. And I remember keeping a close eye on him after that and I never saw it happen again. Maybe that was a seizure...

I've only seen one thing since she said "don't panic" that looked kinda different. It was real quick...he kinda cocked his head, looked out of the corner of his eye, blinked a lot and opened his mouth as if his ear had water in it. As soon as it started, I grabbed his face and it was already over. Maybe that was a seizure. I dunno...6 weeks until we get the results.

I never believed that Jakob was having seizures...I have to say that I'm a little shocked by all of this. And part of me feels like a real moron. What if he's been having seizures from Day 1 and I never had a clue? What if some or all of his stimming behaviors are actually seizures?? What if the seizures are causing his speech delay and had I figured out that he was having seizures 2 years ago, he'd be speaking now??? I could keep going...but the one question that keeps popping in my head....What if it's a brain tumor? That one's the worst.

Then I spiral into...What caused this? Something that happened during my pregnancy or something we did along the way? Why is it showing up now? A decision I made is somehow to blame...

I shouldn't have taken the sedative for the surgery that put me on bedrest, I shouldn't have had the RH factor shot, all the meds to stop the contractions, I shouldn't have let them use suction during delivery, I shouldn't have gotten his immunizations, all the prescriptions he was on for ear infections and acid reflux...and on and on...

It's the guilt thing. It will never go away. If there's a mom out there who swears she never questions if she's to blame, I really wanna meet her. And it's not even a matter of believing that I'm to blame, it's the question that maybe I am...never knowing for sure and nothing I can do about it now. But it's always there. It's hard to stop thoughts from popping into my head. Somebody make the voices stop...(just kidding).

That's when I usually try to stop my brain from running and be rational. That's not always easy...but I do my best. Sometimes I start with a quote from Psychic Suzanna ..."The past has no power and the future is changeable. The power is in this moment and you". Sometimes it works, sometimes not so much. Bottom line...all I can do is watch for anything unusual. That's it right now. So I gotta do just that and "relax", "believe" and have "faith". (All my signs are still up...and I've added a few more).

I've contacted his fabulous doctor and she calmed my nerves. I thought it was such a great response that I wanted to share some of it thinking it may help other Moms out there...(I hope she doesn't mind)...

"The funny thing about seizures is that unless they are very prolonged, or someone is driving or swimming or participating in some kind of activity like that,
they are not dangerous. It worries us all to think a child is having a seizure, but many kids have small seizures, sometimes frequently, without any "damage" to them.

What I want you to look for (but don't make yourself crazy!) are any episodes where he has repetitive movement that you can't stop or disrupt. Some of these episodes can be very brief, so it can be hard to
determine if you could have stopped it because it's already over! Staring spells can be hard to interpret because so many kids have them, but again when you can't interrupt it and he seems really out of it,
that is more suggestive of a seizure.

There are some times during which a child's seizure threshhold can be lowered (meaning if they have a risk for seizures anyway, the risk increases) such as during illness/fever, certain growth periods
(adolescence) or even stress, depending on the child.

Keep me posted. I am glad we are doing the longer EEG. If he keeps doing this in OT, see if you can capture it on video."

She's a wonderful doctor...I think we'll keep her...

I've alerted all of Jakob's therapists and they're on the lookout for anything suspicious. I've been getting reports from everybody...so far we've had some sightings but no major accounts. Some blinking and a little eye-rolling but nothing major.

I also remind myself that if he's having seizures, once medicated, he may be better able to speak. Now that would be a blessing. What if we get him on meds and he starts talking? Wow, I think I'd break down in tears. So...in the end, this could be a good thing. Everything happens for a reason, right? We'll know more in 6 weeks.

My rational moments are becoming more frequent and the panic attacks are dwindling.

One more possible explanation for all of this is something my Mom suggested..."Maybe he's just constipated." Thanks, Grandma...