“Did you see that…that staring thing he just did…did that seem strange to you?” I remember asking this very question to my husband when we first started noticing Everett having an increase in abnormal staring spells about 3 months ago. The staring spells that before we had written off as his visual deficit or maybe even just a “daydream”, were now becoming something we couldn’t ignore. They were so frequent, happening almost daily, and they weren’t a “typical” stare…these are the blank stares that no matter how many times we wave our hands in front of his face, shake his arms or legs or call his name, there was absolutely no response.
“I guess I should reach out to neuro and talk about getting an EEG”, I sighed. The combination of the absence events mixed with a decline in his mood/demeanor have had my mama senses on full alert since our Utah trip this summer. Something just wasn’t right…I learned long ago to listen and trust my gut, and my gut was telling me something I didn’t want to believe…these are seizures.
I’ve had a little over a 6 weeks to process the news we got from UCLA…and as much as I’d like to say my gut instinct was wrong, it wasn’t. Several absence spells were captured on the video EEG and enough data was captured for our neuro team to feel strongly that these are focal onset seizures originating from the side of his brain that is supposed to be non-functional…but somehow is still functional enough to let these little electrical devils wreak havoc on my boy’s brain. (Side note…the fact that they see these abnormal electrical impulses originating in his non functional/bad hemisphere is probably the best option in an otherwise screwed up situation…it means that his “healthy hemisphere” is still hopefully healthy and we just have to figure out what is going on with the remaining parts of his bad left hemisphere)
Even though I’ve heard the phrase “we think that the seizures are back” more times than I care to count. Hearing it never ever gets easier, especially as we were finally allowing ourselves to feel that maybe, just maybe, we were on the other side finally.
I’ve said so many times that I never ever took the fact that Everett had over 2 years of seizure freedom for granted, because I have seen how quickly it can be snatched away. I just never really dreamed it would happen to us again. Our boy is a fighter, a warrior, the bravest and strongest in all the lands and while this all feels like a horrible gut punch and a horrible, awful dream…we will continue to fight for answers and advocate fiercely for our boy. We still hold on to #hopeinonehemisphere…that hope just looks a little different right now, and that is a tough pill to choke down right now.
862 days of seizure freedom…and just like that it’s all gone. 💔