Why I have a doctor headache this week….

At this point we have dealt with a lot of doctors.

We have an appointment with her 21st doctor in a bit over a week. In addition to the specialists that follow her now, we have had several that, um, didn’t work out for us and many many doctors that have overseen Esmé’s care when she’s been admitted to the hospital for what I estimate to be about two months total since birth. Between residents, fellows, attendings, and specialists that makes for A LOT of doctors just in the hospital.

I know doctors.

You see, I really love a good doctor. I love to try to understand their logic, see what experiences they have had, try to gather more knowledge myself. There are several doctors on Esmé’s team that I genuinely enjoy more than just about anyone in the world. I look forward to seeing them not just because of how they help Ezzy, but because I like to problem-solve with them. I like them, and it really seems like they like me. They respect my gut feelings, my observations, and my research. They know we are all aiming at the same thing: Ezzy’s health and safety. They get that it doesn’t matter who comes up with the ideas that get us there…and that, since Ezzy is always resistant to falling in any category of “typical,” some out of the box thinking might be how we get there. So they listen when I have some, possibly wacky, idea. And I listen when they are willing to explain to me why it might not be the right answer…and what else they have to suggest to try first.

Finally, and perhaps most importantly, they know that I will not accept “because I said so” as an answer…

The problem, however, with having a handful of doctors like this is that they seem not to be in the majority…even at really good institutions. The sad truth is we have interacted with a number of doctors who seem either intimidated or annoyed by our “gut” feelings or our knowledge, a ton of doctors who are unwilling to work with us as a team, respond to our questions, and react appropriately to our concerns.

What I find toughest about this–aside from the fact that it just pisses me off–is that I forget that not everyone responds to the honor of being on Esmé’s team in this way. I get so used to speaking with Esmé’s doctors as partners (“Hey, have you thoughts about x?” “Can we just test her y levels to see?”) that I am genuinely startled when I get pushback for illogical reasons…reasons that I can only break down to either 1) I don’t understand the research you have done, 2) you need to wait until I am the one to figure this out, or 3) how dare you question a doctor, madame?!

I get it, I really do. Doctors work very hard for a very long time to gather the wealth of knowledge they have. Most of them are pretty darn smart, and all of them a driven. And I am sure that they have a right to get annoyed that someone comes in having self-diagnosed on WebMD with some bizarro thing that clearly don’t have. Hey I have totally been that asshole before…convinced I had pancreatitis when I really had gas or whatever.

But with Ez it is different. Yes, I am a nervous mom. Yes, I google everything. Yes, I am pushy when I am scared about my kid. But I am also, essentially, the world’s foremost expert in Ez (tied with my darling hubby). I am a professional in Esmé. It would be unfair to expect any doctor to have a firm grasp on Esmé’s disorder(s) in as complete a way as I do…she is unusual even among the 100 other people diagnosed with the same disorder. And I graduated from WebMD to reading journal articles several of her doctors have admitted they can’t follow a long time ago. That’s fine. They have hundreds of patients. I have Ezzy. I don’t need to care about medicine that doesn’t apply to her.

And none of this is about ego. I don’t care to be right about the things that I worry about. I want to know how to help. I don’t want Esmé to have CVI or CAIS or whatever, but if she has them I want to know. I would LOVE to be proven wrong! Just like I didn’t want to be right that she was having seizures when several doctors insisted that she wasn’t having them. I didn’t argue because I was stubborn, or because I have a big ego.

I argued because we were right…and someone had to help Esmé…and I wasn’t going to shut up until someone did, or was able to prove us wrong.

In fact, that was the opposite of ego. My ego would have been better served by putting my head down and not looking like an insane person to insist, despite all evidence to the contrary, that my girl was having seizures…all the while hoping, desperately that someone would finally show me some evidence to contradict my deepest fears.

But that didn’t happen, did it? Nope. She WAS having seizures. It just took a year to prove it.

I bring this up, because I started this week with one of those doctor conversations that makes me want to bang my head against a wall. And the more I think about my interaction with this doctor, the more I realize how unnecessary it is to have this kind of exchange. All I wanted was someone knowledgeable to talk to about my concerns and a couple of action items to do sooner than the almost three month wait to even get in to see this person.

Now instead of having something to talk about at the visit that directly affects Ez, I will offering a review of the relevant literature I have read.

Couldn’t we all have spent our time a little bit better?