Ok, so not really. But today was Zoë’s appointment with the neurologist. To be honest, I’m an obsessive researcher, so the appointment went about as I expected. Which is a good thing. The only surprises I like any more are gifts of camera equipment or chocolate. 😛
I was immediately impressed with the doctor when he walked in. He was great with Z, and truly understanding of the situation. We are so blessed to live where we do and to have the resources we have!
He thinks she is having focal onset seizures, which pretty much means that it’s localized in the brain…at least at the start. It’s not normal in febrile seizures (because we can’t have a simple diagnosis, oh no! She has to have complex febrile seizures), but it’s also not something we really need to be concerned with. The paralysis is slightly more concerning, but again….not majorly. We are being sent for an MRI (as I expected) just to ensure that there isn’t something going on that we aren’t aware of. Unfortunately, it’s not set up until October 28th. Another norm, I guess. I hate the waiting game, but I get it. So we won’t have those answers until Halloween time.
Dr. Arthur also set us up with a prescription for a medicine to give her when she has her next seizure (hopefully, never). Pretty much just to help her come out of it quickly. Seizures will still last 10-15 minutes most likely, but he’s hopeful they won’t go beyond that. And if they do, we need to get her checked out. We also have protocol in place to check her temperature every time a seizure happens, just to make sure they stay febrile and don’t deviate into something more.
Most children who have febrile seizures (usually occurring between 6 months and 6 years) apparently only have 5. We’re up to 3 (that we know of). So I have a feeling we’re going to be one of those unlucky ones that has more than the average bear. He also said something about kids only usually having fevers 1 or 2 times a year and I laughed. To be fair, Paige and Kira only get 1 or 2 a year…poor Z! The seizures won’t (shouldn’t?) cause any sort of brain damage and her chances of developing epilepsy is only at 2% (normal kids have a 1% chance).
Something I didn’t think about until I was filling out paperwork is that this child has always had issues with breathing/temperature control. She was the only one of my kids to be put back on a monitor right after birth. So it may just be that the part of her brain that’s supposed to keep her level isn’t as developed as it needs to be. And that would be just a waiting game for that to mature.
So as I said, I expected this. Right down to the order of an MRI. And I really felt comfortable with Doctor Arthur, I feel like Zoë is in good hands with him.
Now we wait again. Next week’s appointment will tell us more of what’s going on and what they are going to test for. Her blood work came back with a few high numbers and a few low numbers, so I’m interested in what direction that is going to take us. My mommy-gut says we’re looking at something autoimmune, especially since I have vitiligo. Apparently, that’s an autoimmune disease and it’s very likely that I’ve passed something down genetically. No, for the record, I’m not blaming myself. It is what it is, not like I ever asked for that! And I didn’t realize that it was considered an autoimmune disease until I started researching possibilities. But we still could be looking at a reoccurring infection and there’s still a tiny, tiny, TINY chance that it’s the “c” word. I’m preparing myself for any possible scenario.
I did sit Paige and Kira down today at lunch and kind of (in the simplest, least scary way) explained what was going on. More because I’ve been incredibly on edge with my anxiety running so high and they need to know that it’s not them. Although picking up their toys or doing their chore the FIRST TIME I ASKED FOR CRYING OUT LOUD would help out tremendously. But I think Paige at least understands that Zoë is sick and we’re going to try to find out why. Kira doesn’t get it….she’s 4, I don’t expect her to.
So that’s where we stand. Still praying and crossing my fingers that we find out what’s going on and that it’s something easily treated.