Yesterday was our 2nd appointment at Cincinnati Children’s to (hopefully) figure out what is making Zoë have these recurring fevers. I went in with a list of questions and got most of them answered without me even having to ask. Which is great because it means that they are on top of it.
So here is a basic run-down of my notes from the meeting:
She looks good when she’s healthy, which is a great sign. It means that, even though these fevers are highly annoying, they are very likely not serious. No signs of cancer (Thank God!), although we may end up checking into that more thoroughly if we don’t get any answers in the future. But as of now, we can say that it’s not.
Recurrent viral infections
Recurrent fever syndroms (PFAPA, etc.)
But here is the problem…she doesn’t ‘fit’ any of those molds. No swollen lymph nodes, no swollen joints, no canker/mouth sores, no swollen eyes. She just has a fever.
So in an effort to collect all data, I’m in charge of keeping a fever journal for now. Dates, times of readings, temperature, etc.. I was pretty much doing this already, so it’s not much different. I think they are hoping a pattern emerges because that leads us to a fever syndrome and those are the best-case scenarios. And they will keep in touch with us until either the fevers cease or we find out what’s going on. Which makes me really happy….I’m just so used to being brushed off by doctors that it’s nice to have them actively pursuing our issue!
Zoë did have blood drawn and was a complete trooper. She didn’t cry and barely fussed, I was completely amazed. What a strong little girl! And the major benefit we have with having a MyChart account is that I got her results an hour later. Based on what I saw (and compared it to her last panel), she’s normal. No real signs of infection. Her doctor did call me this morning, but unfortunately, called at a time where I couldn’t answer the phone. I’m sure he will call back later, but I am also pretty sure he’s not going to tell me anything surprising.
We have the option to push for a more expensive test that may not be covered by our insurance. I’m a little nervous about the cost, but may go that route if the doctor suggests that we could benefit from it. I get a little apprehensive when a doctor says something is expensive and not always covered though…you never really know what they mean by expensive. And while we have really good insurance coverage and a healthy HSA account, I don’t know that I want to attempt to justify a significant cost if it’s not really worth it. So we will see how our doctor wants us to proceed.
This is all part of the answer to a question I asked though…what if we DON’T find the cause and she keeps having these fevers and seizures? And the answer is that we go fishing for answers. That’s when we start testing for cancers that we’ve ruled out and looking for the completely obscure illness that aren’t currently on our radar. But we will cross that bridge when we come to it. I’m still hopeful that we get some answers, even if it’s just that she’s highly susceptible to illnesses.
I will say that I feel significantly better. I have anxiety issues as it is and all I could think was that something was seriously wrong and we were going to get horrible news. So for them to say right off that they really didn’t think it was cancer and for her blood work to come back normal is amazing. Now we just wait and see what her MRI results bring. Hopefully, it’s more of the same good news!