Apparently March 26th is Epilepsy Awareness Day. (That's the day I started to write this post, but, you know, life.)
This isn't something I knew or ever really thought about, if I'm being truthful. It's also the day that Gabe had an EEG, which came back abnormal.
Some of you have been in the loop a little bit, and many of you have heard bits and pieces, but here's the whole story for those of you who'd like to be updated.
About a month ago, we were in the middle of our normal morning routine. I was busy feeding kids breakfast, packing lunch boxes, gathering backpacks, braiding hair- just like every busy morning in our house. Gabe was standing next to me, telling me about how he hadn't slept well the night before. I turned around to grab a folder from the counter, and as soon as I did I heard the unmistakable sound of a head smacking the hardwood floor.
I spun around to see how on earth someone had managed to fall so hard when seemingly nothing had happened, and Gabe was on the ground, having what I was sure was a seizure.
It wasn't the typical seizure that we're used to seeing on TV (or maybe some of you have been unfortunate enough to witness in real life). There were no full body convulsions. He didn't lose control of his bladder. It wasn't violent. But it was terrifying. His eyes were rolled back. His breathing was irregular. And he was not conscious.
I immediately called 911 and started yelling for another adult in the house. I'm not sure I was thinking very clearly. I was definitely in a panic. But I managed to get through the 911 call and wait for the paramedics to arrive. Gabe had come to (the episode lasted for about a minute, I think, or maybe a little longer). He was upset, unsure of what had just happened, and he had a whopper of a headache, but other than that, he seemed fine.
The paramedics arrived and checked him out. Since we couldn't check all of the boxes that a typical seizure presents, they doubted that was what it was. They thought it may have been blood sugar related, or that he may have just fainted. In any case, they gave us the all clear to drive him to the ER on our own.
At the recommendation of the paramedics, we went to a smaller regional ER, rather than make the drive to the big hospital. We were seen right away, and the testing commenced. They checked everything we expected them to check. There was an IV. There was blood work. There was a urinalysis. There were x-rays and a CT scan. And the doctor performed a basic neurological exam.
Everything looked good, including blood sugar. The doctor there agreed that it probably wasn't a seizure, but what he called syncope, which is a fancy work for passing out. There was one funny spot on the CT, which everyone agreed was most likely an "artifact" (kinda like a shadow created by the overlapping images of a CT), but to be absolutely sure, they transferred us to the big hospital for an MRI, which thankfully was also normal.
Gabe was a ROCK STAR through the entire day, which was very long and exhausting. He only cried twice- once for just a minute when they put the IV in, and another time when they told him it would be a few hours before they came to get him for his MRI. The poor kid just wanted to go home.
At the end of the day, we had no answers, but thankfully all of the biggest, scariest things had been ruled out. There were no brain tumors. No irregularities in his blood work that could signal a bigger issue. We were sent on our way with instructions to follow up with a neurologist and our pediatrician.
We had to wait two weeks to get into the pediatric neurologist, which was frustrating, but you gotta do what you gotta do, right? Meeting with her went pretty much as I expected- we explained the scenario and she ordered an EEG.
Which brings us to March 26th.
They wanted Gabe to sleep during the EEG, so we were instructed to keep him up late and wake him up early. He got a kick out of this. He had a caffeinated soda after school, stayed up late with Aunt Laura to watch Ant Man and the Wasp, and J woke him up at 5:30 and took him to Waffle House for a big ole' carby breakfast. Who wouldn't want a nap after all of that, amiright?
Well, I guess Gabe, that's who.
He didn't sleep. The situation was just too weird. He had 22 stickers on his head, he was in some sort of faux hotel room, his mom was sitting in a chair watching him, and lights were flashing in his face. Thankfully, despite his lack of sleep, they were able to get a good reading and they sent us on our way with promises of someone calling in the next week or so with results.
When we got a phone call only a few short hours later, my mind immediately went to scary places. Thankfully, the doctor fit us in the very next morning to explain what they had found.
Gabe's brain is pretty consistently "misfiring" in one area. Thankfully, it is only in one section, and thankfully the spikes are very brief (as in about a fifth of a second). These spikes aren't a big deal in isolation, but if they happen too often or too close together, a seizure is the result.
Specifically, a complex partial seizure, sometimes known as a focal onset impaired awareness seizure. This means Gabe had a partial brain seizure, and this is why it didn't look like a normal full body seizure.
We learned that given his brain activity, Gabe is a kid who will be prone to seizures. Things like a lack of sleep or the onset of a virus could trigger one. At this point, there is about a 50/50 chance that he'll have another, most likely in the next six months. If he has a second, the odds of a third and beyond get much higher. We will discuss preventative medication at that point. There is also a chance that he'll never have another seizure as long as he lives (we're hoping for that option). If he does have another, it will be fine. There are no long term affects on the brain.
No one can really explain why these spikes are occurring, but the hope is that it's just due to brain development, and that he may one day simply outgrow them.
So now we wait. We are trying to find a balance between letting him be a kid and live his life, and not letting him wear himself out to the point of exhaustion. I am trying not to panic when he coughs or gets a weird look on his face. I am trying not to constantly feel his forehead for a sign of a fever. We are definitely more concerned about this than he is- he just says he hopes that if there's a next time, he's standing on the carpet with no toys around.
Seriously, this kid is awesome.
In the moment, this was beyond terrifying. But in the end, it's just one of those things.
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