Just as I’d hit publish on my last post, Ethan, who’d been napping in the living room, started making weird noises like he was choking. When I turned around to make sure he was OK, he was on the couch with his back arched, eyes rolled back, and jaw and tongue twitching and drooling.
I was surprised to notice he was watching me as I ran across the room to help. Not knowing what else to do, I helped him sit up straight and turn his head my way, and asked if he was OK. He nodded, but his mouth continued twitching, and the gurgling changed to what sounded more like growling. One eye struggled to maintain contact with mine, as though it was more interested in joining the other’s attempts to examine the top of his head.
After about 45 seconds that felt like an eternity, the garbled noises finally became clear enough for me to understand what he’d been trying to say all along: “Don’t worry, Mom. My body just does this sometimes.”
NOT the thing a mom wants to hear as she’s making a mad dash for the phone! But he repeated himself several times as his teeth stopped chattering and I knew I had not misheard. What a sweet kid I’ve got to spend his energy assuring his mom that he’d be OK!
I called our doctor, who happens to be one of the best I know. He’ll schedule some tests sometime in the coming week. And of course I turned to my good friend google, searching for conscious seizures (as that’s the best way I could describe what happened.) As I was looking over a few sites, Ethan told me how it felt and how often it happens.
He told me he was trying to talk but just couldn’t control his mouth, apologized for drooling everywhere, and laughed out loud at my depiction of how things seemed from my perspective. Since he’d read over my shoulder a bit, we talked a little about seizures and how it’s usually just a little zap in the wires, so to speak, but I told him we couldn’t know for sure what was going on just yet so we’d need to do some tests next week. He was pretty excited that one site suggested sleep deprivation prior to the scans: “Does that mean I can go play the Wii at Dad’s all night?”
Then, pointing out the fact that most of the sites we’d visited typically had graphic of a head with little stars inside the brain area, Ethan laughed and said, “Now THAT’S a brain storm!”
Anyway, the fact that he’s fully aware of this happening gives me hope that this probably isn’t very serious. We’ll do the tests just to make sure. I’ll be praying for him & appreciate your prayers as well.
— UPDATE —
Ethan got his MRI and EEG, and what do you know… google got it right! His MRI was clear, and the centrotemporal spikes found on the EEG are consistent with Benign Rolandic Epilepsy. Which should be benign, as its name suggests, and he will almost certainly grow out of it in his teens. He probably won’t need medication as long as he only has seizures in bed, which makes me really glad. And we’re noticing a definite pattern: he seems to only have seizures when he doesn’t get enough sleep, so hopefully with a little more consistency between bedtimes at my house and at his dads, we should be able to avoid them entirely. So thanks for all your prayers and well wishes! He’s one resilient little guy – we’ll get through this 🙂
By the way, apparently the reason I hadn’t witnessed the other ‘sometimes’ is that it seems to happen when he’s just waking up or falling asleep. Hoping that’s a good thing.
Wow. Hopefully it’s nothing serious…
Yeah, I’m hoping that as well. For now my strategy is to get him in for the tests while acting like it really isn’t a big deal, since I don’t want to freak him out.
Gosh!! I will definitely be praying for your guy. Bry had a cat scan at that age at primary childrens. It was easier than going to the dentist.
You know, he did have a few times where I’d put him to bed only to come back and find him shivering uncontrollably. I’d put another blanket on him and rub his back, and he’d relax and mumble a “Thanks momma” — and then I’d go beg his dad to let me have the broken window replaced. I’d be so sad if I found out this is something I should have noticed and acted on years ago.
But on the bright side, the fact that it isn’t a brand new symptom tells me it’s probably totally benign. Here’s hoping.
Not even sure how I got here. But I just said a prayer for you and your little one.
Prayers are with you… Try to resist too much “internet symptom checking”….I am so guilty of that–I’ve lost many hours of sleep doing this, and it never proved helpful, only made me a nervous wreck. Taking your son for tests is the best–how is he doing?
Thank you! Well we haven’t heard the results of his last test just yet, but he had an MRI and it was completely clear. That is a huge relief. We chatted with the doctor, and as google had lead me to suspect, he probably does have Benign Rolandic Epilepsy. That would explain his consciousness as well as the fact that I hadn’t seen it before – with this kind, kids typically only have seizures just on waking or right before they fall asleep. It also normally affects just the mouth area which would explain why I’d just thought he was shivering the few times when I may have seen it before, however as with any seizure, once it gets started it can spread to other areas of the brain and affect other parts of the body.
Personally I think this is GREAT news. What’s better yet: they also tend to outgrow it, and often do not even need medication because the seizures will happen when they’re safe in their own beds. Getting enough sleep should help him. Between all night gaming fests at his dads and his constant stuffy nose & its associated post nasal drip, I don’t think hes been getting his proper Z’s. So I’ll focus on fixing that and I think it’ll help. Also he had the EEG recently to try to determine how extensive the problem is as that will help them know whether they SHOULD be medicating to prevent other seizures. We’ll get the results soon.
Oh but on symptom checking, yes worrying ones self to death is a huge danger. During the week or so when we’d had the MRI images but didn’t have results for them, I spent way too much time analyzing MRI images online and comparing them to his. And I think reading about the Benign Rolandic Epilepsy (or benign romantic epilepsy, as my kids call it) online first was calming to me, -however- I realized pretty quickly that it could have easily lead me to pre-diagnose him and perhaps miss telling Dr. Thompson something important because I was so sure for myself of what it was. So I kept my mind open and my mouth shut about my suspicion. I think it worked out well.