We were asked one simple question that may change ours and Zoe's lives forever.
"Does Zoe ever blank out and seem as if she's staring off into space?"
Simple answer? Yes, she does. But we always considered that this may be just a self-stimulating behaviour, or part of her delays. We never considered that when this happens, and she's difficult to "bring back" and appears deaf, that she could be having a seizure.
She's never had a noticeable one, that we've noticed. It is possible that she has seized when her fever spikes so high and so quickly, and perhaps that is what wakes her in the night when she is so hot. It could also just be the fever itself. But according to the pediatric neurologist that I e-mailed, and a few new micro family members we've made through groups, Zoe may be having silent seizures, or absence seizures. After watching examples on Youtube (and I know I should not put my trust in Youtube), it is exactly Zoe.
So the PN e-mailed me back today and said he would like to see Zoe in his office, discuss the results of her MRI and proceed with evaluations of her diagnosis and try to find a cause. We know she may have a metabolic disease, which is, at the same time, unlikely, but we were excited that a PN wanted to see her and try to help us all. That was, until, the pediatrician decided that she doesn't need to see a PN.
So, in short, it's slightly frustrating, but I'm going to keep persisting. There's just a feeling deep down that says to go see a PN, and when a PN says he wants to see her, that also says something.
On another note, we should have the requests of Zoe's FISH testing for 22q13 back in less than 6 weeks. It feels as if it's been forever since she had the bloodwork done. Hoping for some results, positive or negative.