I wasn’t going to write about this until if we got an official diagnosis but it’s heavy on my mind at the moment. I think there’s a part of me that stays in denial for a while when facing new challenges. If I don’t talk about it then it’s not happening?
A couple of months ago, Jude started having these weird episodes. The first time it happened, I instantly thought “seizure”. He was playing in the living-room and all of a sudden he froze and his face started vibrating. The best I can describe it as is like a earthquake, or like a phone on vibrate mode was stuck inside his head. His face was all tensed-up. However, he didn’t collapse nor was he unresponsive.
He stood there and did something very rare for him – he peed his pants. The thing is, he was completely conscious. He could hear me and his legs were strong enough that he didn’t fall. A few seconds later, it stopped and he acted like his normal self. He was responsive and answered all my questions without a problem.
Is Jude having seizures?
I told Willy about it and we came to the conclusion that it was just a weird behavior. Still though, I couldn’t stop thinking about it.
It happened a few more times and that’s when my anxiety kicked in. It’s always the same thing – an unnatural tension and vibration in his face. These episodes are always short (under 30 seconds) and since Jude is always conscious during them, I convinced myself it was just a behavior.
Last week, though, it finally happened when Willy was home. After seeing the episode himself, Willy had the same first thought as me: “that’s a seizure”.
We tried to get Jude to do the behavior intentionally (to see if it was just a weird thing he was intentionally doing) but he can’t make those movements. No matter how hard we try to get him to reproduce them himself, he can’t. It seems clearly out of his control and you can’t snap him out of it either.
Doctor, neurologist and EEGs
We saw Jude’s PCP this week but there’s no way to know what we’re exactly dealing with until we catch one of these episodes on an EEG. We’re seeing a neurologist soon and I’m hoping we get answers then. I’m scared and heartbroken. I have so much to be thankful for but I also wish my boys could catch a break. These episodes have been happening a lot more recently. Almost every day for the past week. Jude is a trooper. After he has one of these probable seizures, he’s the one who tells me “it’s okay mommy, it’s okay” while holding my face in his chubby little hands. He feels okay but he sees that I’m scared.
I know I have to be strong for him but damn, this is scary. It’s a totally unknown area for us. No history of seizures in our family. Apparently, epilepsy in children is common and seizures often stop when kids are older. Let’s hope for a quick and most importantly non-scary diagnosis. I’ll keep you posted.