The Diagnosis Is Always in the Last Place You Look

Well.

Wow.

I think we are going to figure out half of my kid's problems.

I'm stunned. 

A miracle of having the exact right friend. It wasn't the doctors, it was my friend, a mom in the trenches, who found the right path for us. From just...life experience.

The testing is starting to come back now and it's abnormal.

We're now waiting on fancy pants extra sensitive testing that involves three hospital systems, massive bureaucratic confusion between systems, and blood travelling out of state for more insight.

It might still not be? Maybe?

I don't want to get anyone's hopes up and I've seen abnormal stuff end up being normal before.

But yeah. I think we found the thing. It's kind of bizarre because there's no family history that I'm aware of. My kid manages to have all new problems a lot lol and I'm often outclassed as a result. I don't have the bandwidth for all the medicine I really need to learn on top of everything else.

This overlaps with a lot of the post infection syndrome stuff that Infectious Diseases was trying to treat. The main symptom had us thinking it was one unrelated issue--for a lot of people it is just one thing unrelated to the rest of their health--but for my kid it affects everything. It wasn't just post treatment Lyme or Covid. 

Unfortunately, there aren't great treatment options. There are medications that help, but they have serious limitations and very narrow use cases. Long term, she will likely need surgery to address the most bothersome issues...but that will be tricky. We may have a hard time finding a surgeon.

I don't know. We'll see. But we barked up a tree and there was actually a zebra there. 

If not for my friend, medicine would've given up on us. If not for patients, we would've never found what to do next.

It wasn't the doctors who figured it out. It wasn't the doctors who optimized the treatment either.  It wasn't that the testing didn't exist or took years to run...we just never met a single doctor who thought to order it until WE figured it out. Why is that? Why is that such a consistent pattern? Why can't patients count on medicine?