It's Funny What One Word Will Bring About

I was at the post office when the school nurse called, and by the time I got home, she was gone for the day. A friend of Becky's was in the hospital, so we headed out first thing the next morning to visit her. I'd forgotten about the phone call, but that's alright as there was a new blinking message from the nurse on the answering machine when we got home. Micah has been to the school nurse off and on all year for things like pimples on his bottom that itch, and, well, pretty much pimples on his bottom that itch. A lot. But they're pimples, and there's nothing we can do about them, and they cleared up all on their own like pimples will. I figured he'd started itching again, and I was doing all sorts of eye rolls inside my head about the panic the school mustered up over them.

You can imagine, then, my shock at the news that Micah had been having seizures at school. Nothing hugely serious, just kind of zoning out for a bit, staring off into space. He'd had a fairly major episode while playing kickball on the playground the day the nurse called, and that's when his aide realized what was going on, and then connected the dots to the other few episodes in class when Micah kind of stared off into space the week before. Before you judge her, you have to know that Micah doesn't like classwork and is stellar at ignoring directions to do anything related to that. To ignore his aide when told to do something would be classic Micah.

I am not a panicker by nature, mind you. I have fully embraced the "give it time and see what happens" approach, but there was something about the word seizure and the whole unexpectedness of it that just threw me. I immediately called neurology at Children's to schedule an appointment, but as I was listening to the automated message, I realized there were 2 classes of doctors. The "talk to these to schedule an appointment" and the "unless you want THESE" doctors. I hung up and emailed the Downs Clinic to see if they had a doctor preference for a kid with DS to see. They'd know, and I trust their opinion. I figured waiting a day for them to get back with me wouldn't delay much since it was Friday anyway, and really, I wasn't going to get an appointment that afternoon.

The Downs Clinic called me within 5 minutes. That did nothing to alleviate the panic that I'd told myself was an overreaction.

They said to go with the "elite" team if we had a choice, but to get an appointment within 72 hours at all costs. If that was not feasible, get him to the emergency room. At Children's. Immediately. And then he had another seizure at lunch as we were making plans, and we rushed to the school to pick him up, drove 90 minutes to Children's ER in Pittsburgh, and were admitted overnight.

An epic battle was waged over the IV in his hand, Micah lost, and then spent the evening sleeping off the fatigue. The Bionic Robot Arm kind of changed his opinion of The Big Bad, and he didn't put up a fuss at all over the monitors strapped all over him. I spent the night not sleeping beside Micah (but hey, I got half a book read!) and Micah woke semi-refreshed the next morning. But then he started vomiting.

In Micah's mind, a hospital stay equals ear tubes. He pointed to his ears repeatedly, and although we reassured him that he would not be having surgery, he just couldn't fathom otherwise. He had spent the evening and the overnight, and now that morning had come, the prolonged inevitable had just gotten the best of his nerves. He was physically ill from stress. And I stepped in it with my only pair of socks.

We consulted with 3 different doctors, a handful of nurses, and the ER staff over the course of 21 hours. It was evident to all that he'd been having absence seizures, where he just zones out for a few seconds (or more) and then resumes with normal life. So when the EEG came back completely negative, it was a bit baffling.

Oh, the EEG? Dude, Micah laid down, allowed the tech to paste 27 leads onto his scalp, closed his eyes when told, blew on a pinwheel for a full 2 minutes when instructed, and calmly watched a movie when he could. FULL COOPERATION. I'm pretty sure aliens stole the boy's body and replaced it with some kind of compliant kid. One can't argue that the test results were inconclusive, like his hearing tests generally are.

So we were sent home, knowing that our boy has been having seizures for quite some time, but we were never aware of it. (And that makes you feel like the Loser Parent Of A Lifetime, let me tell you.) We'll be keeping a journal of seizure activity that we notice from now on, and conducting another EEG in conjunction with his sleep study in December. And because he did so incredibly well with his EEG over the weekend, we're hoping (but not expecting) that the sleep study will actually be able to happen. Cooperation is a come and go kind of thing with that boy.

My mind has been sorting through the numerous visual files it has on hand of Micah. I have, in retrospect, seen him have seizures. I have no idea how often it's happened, or when it started, but I have seen him just stare off into nothing for a few seconds. I'm connecting dots like his aide did, now that I'm aware. But the doctor said that if you're going to have seizures, this is what you'll want. They pose no health problems, do not set him back developmentally in any way, and he's completely unaware that he's having them.

So really, we had a weekend away in a shared room with a bit of stress and some medical tests for entertainment's sake, and came home none the worse for the wear. I didn't think our life was boring, but apparently it needed shaken up a bit. Next weekend, I'll take Boring for 12, please.

1 comment:

Annette W. said...

Wow. I think you know Evan had a seizure...for 3 hours.

I am not at all surprised that at least a handful of them were missed. Kudos to the aide for figuring it out!!!

As you figure out the meds be sure to discuss behavior and concerns with the dr.