Yesterday was a no good, terrible, horrible, very bad day, and every time I think about it I get mad all over again. It was the sort of thing where I couldn’t help just stepping outside of myself, mentally, even WHILE it was happening, and thinking, “If I wrote this up as a fiction story people would be all, ‘Yeah, it’s just not believable, I’m sorry.’”
So I am too lazy to find the old posts and link back, but for anyone who’s new ’round these parts, my darling daughter has some sort of chronic skin condition that she developed when we moved to Georgia which has been steadily worsening ever since. We are about to begin The Four Summer Of Mystery Rash, only this year as a SPECIAL ADDED BONUS, Chickadee busted out the rash in December (the earliest yet!) when she had the flu, and though we sort of contained it for a while there, she came home from her band trip with a full-blown rash, as well.
We see a team of dermatology specialists at Big Atlanta Medical Center who supposedly Know Things, so we’d called to let them know what was going on, and yesterday morning they called and said “Can you be here in two hours?”
So we dropped everything and went. It’s a 90-minute drive for us, so saying that we dropped everything is pretty accurate. Off we went, winding our way into the big city.
I’m pretty sure that we’ve seen the entire dermatology department there, and because it’s a teaching facility that means we’ve also seen a bunch of med students and residents, which is fine. The more the merrier! Maybe someone will figure it out, right? Our original doctor assigned to us there was very nice and earnest, but after ruling out nickel allergy, sun allergy, photosythnasomething and a few other things, referred us to the department head. He’s the one who put her on a cocktail of allergy medications that have lessened the severity and frequency of her outbreaks, somewhat, but we still don’t know what’s wrong with her AND the allergy meds that were helping, before, seem to be doing diddly squat, now.
Anyway, when they told us to come in, it was to see a third doctor there. I thought we hadn’t seen her before, but apparently one time I let Otto take Chickadee to a checkup there without me, and they’d seen her, then. Me, I had to choke back giggles when Dr. BadHair finally walked into the room, because HOLY HELL LADY, WHAT DIED ON YOUR HEAD?
Catty? Yes. I’m sorry. Except that I’m not. We drove 90 minutes into Atlanta and sat and waited for over an hour, and when we were finally brought back into an exam room (where we waited another half an hour), we came face to face with a woman in her late 50s who had an asymmetrical, pointy haircut in three different colors (black, blond and reddish). It might’ve been cutting-edge punk on a woman a third her age, but on her—against the lab coat and sensible loafers—it was merely terrifying.
And had she done a single thing that was useful, I would not feel the need to tell you about her atrocious hair. But given that I am a shallow, petty individual who is FRUSTRATED BEYOND BELIEF, you betcha I feel the need to tell you exactly how fashion-challenged she was. Maybe all the hair dye had addled her brain.
Dr. BadHair: So I see that you called in because Chickadee has a rash again.
Me: Yes, usually it doesn’t start up again until Summer, but she got a little sunburned on her school trip and it’s really bad again. We had to start her on Prednisone.
Dr. BadHair: Prednisone clears it up?
Me: Yes, she generally responds well to it. You can see where it’s already starting to kind of flatten out and fade, here and here and here.
Dr. BadHair: I see. And this happened when she got sunburned?
Chickadee: Yeah. Just a little, though.
Me: Right, see, just her nose is still a little red. She just got a little burned on her face.
Dr. BadHair: Well I think it’s pretty clear we’re looking at sun allergy.
Me: Um, the team ruled that out last year.
Dr. BadHair: But she developed a rash after being sunburned. It’s pretty clear.
Me: Yes, and as you can see from her file, sun definitely exacerbates her condition and always has. But she burned her NOSE and developed a FULL BODY rash. Does sun allergy typically present like that?
Dr. BadHair: No, usually only on the exposed areas.
Me: Right. Well, she burned her nose and has a rash behind her knees. So.
Dr. BadHair: Were you wearing shorts?
Chickadee: No, I was wearing long pants. No sun on the backs of my knees or really anywhere else that I’m rashy.
Dr. BadHair: Well, that is unusual. But she only gets rashy when she’s in the sun.
Me: No, remember I called in when she got the flu and got a rash. I was hoping that was some sort of clue. In fact, that’s why we’d like to see someone in Immunology.
Dr. BadHair: That rash was a fluke. You don’t need Immunology, I mean, allergies and skin conditions are immunological issues, too.
Me: Wait. That rash was a fluke?
Dr. BadHair: Yes.
Me: How do you know that? She got very sick, she got a rash. That seems important, to me.
Dr. BadHair: No, I don’t think it was. It was a fluke and we have to rule out sun allergy.
Me: Ooooo… kay. How do we do that? I mean, I thought we already had, so what do you suggest?
Dr. BadHair: Oh, we can’t test for it here. There’s a doctor in Birmingham who can, though.
Me: You want us to go to Birmingham?
Dr. BadHair: If you want to have her tested, yes.
Me: Even though her symptoms don’t fit with sun allergy?
Dr. BadHair: We don’t know that. Birmingham would be the place to go.
Mind you, throughout this exchange, Dr. BadHair spoke quietly, mildly, as if we were discussing the weather on a particularly boring day rather than talking over my rash-covered kid who was lying there on the table between us, trying not to scratch.
Me: Okay, well, we can certainly look into that, I guess? What do you suggest we do in the meantime?
Dr. BadHair: I don’t know.
Me: You don’t know?
Dr. BadHair: No. I’m stumped.
Me: You’re stumped.
Dr. BadHair: Yes. She’s certainly an unusual case.
And I waited for her to continue, but instead she started packing up Chickie’s file as if she was about to leave.
Me: I’m sorry, I appreciate your honestly if you’re truly stumped, but WHAT ARE WE SUPPOSED TO DO, now? She can’t go out in the sun without getting a rash. She can’t swim, and we have a pool. Basically she lives from course of Prednisone to course of Prednisone, and I don’t know if you’ve ever had a teenager on steroids but it’s not exactly fun for us to constantly have to be choosing between itchy, rashy, miserable kid and steroid kid. She’s supposed to go to a special camp this summer! For three weeks! How can we send her away when we have no idea what’s wrong, still, and no treatment plan?
Dr. BadHair: I understand you’re frustrated.
Me: That’s right, I am. I get it, okay? I get that some of this is art rather than science. That’s fine. Tell us what to try next.
Dr. BadHair: I don’t know.
And it was right about here that I started to fantasize about punching her, or stomping on one of her sensible shoes as hard as I could.
Me: You keep saying that. Fine, if you don’t know, who does?
Dr. BadHair: I don’t know. I guess come back next month for your regular appointment with Dr. DepartmentHead.
Me: And this month we should…?
Dr. BadHair: I don’t know.
Me: Do you understand that this is FOUR YEARS we’ve been without an answer? Four years that this child has been in agony, on and off steroids, and unable to live like a normal kid?
Dr. BadHair: That’s a long time.
Her voice was still mild, slightly bored. No inflection. No emotion. My fantasies shifted to closing my hands around her neck and squeezing until something mattered to her. But because I’m not actually a sociopath I decided to try a different tack.
Me: Okay, let’s talk about camp. Three weeks, several hours from home. Is there some way we can make that work?
Dr. BadHair: Where’s the camp located?
I told her where it was.
Dr. BadHair: Oh, well that’s not far from several major hospitals.
I blinked at her for a few seconds.
Me: Soooo… because it’s not far from medical care, we should send her off with a chronic, undiagnosed condition, and just… hope that the counselors will take her to the hospital if it gets bad…?
Dr. BadHair: Well I’m just saying she wouldn’t be stuck in the woods or anything, if she needed care.
Me: Well I am just saying that SHE IS GOING TO NEED CARE if we have no diagnosis and no treatment plan. And I doubt the program would be pleased to have this dumped on them. And we can’t exactly just run on over there, given how far away it is, if there’s a problem.
Dr. BadHair: You could just put her on Prednisone.
Me: For THREE WEEKS?
Dr. BadHair: Why not?
Me: Um, because she’s a growing child and prolonged steroid use isn’t without side effects?
Dr. BadHair: Well, that’s true.
Again I blinked at her. Still, she sat there looking bored.
Dr. BadHair: You know, there’s special dermatological camps. For kids like her. Maybe she could do that, instead.
If only I’d had a camera in my hand, I could’ve taken the greatest picture of Chickadee EVER, as comprehension dawned on her face about what was being suggested. As it was, I very nearly choked on my own tongue before I was able to speak.
Me: So, instead of attending an elite math camp for gifted students, your solution is that she go canoeing somewhere with other kids with skin problems.
Dr. BadHair: I’m just saying it’s an option.
Me: I am just saying that my child has been miserable and undiagnosed for four years. I am just saying that instead of telling us what the logical next step is, you’re telling me that you don’t know, you have no suggestions other than that she should just stop pursuing a normal life. I am just saying that as a parent THAT IS NOT AN ACCEPTABLE ANSWER TO ME.
Chickadee grabbed my hand and squeezed it as my voice cracked. She was alarmed by my emotion, and I took a deep breath, squeezed back, and tried to steady myself.
Dr. BadHair: I’m sure you’ve seen House. These things take time. [And as she said this---in the same bored and disinterested tone---she actually shrugged.]
Me: Uh, sure, but on House they TRY THINGS. Let me ask you this: If this was YOUR child, and you’d been four years without relief or a diagnosis, what would you be doing now?
Dr. BadHair: I don’t know.
At this point, Dr. BadHair was called out of the room by a nurse, and I went back to the waiting room to fetch Otto. I believe my exact words to him were, “OHMYFUCKINGGOD I AM GOING TO HURT THIS WOMAN PLEASE COME NOW.”
When Dr. BadHair returned, she reiterated that we should come back in a month. Otto then asked her the same questions I’d just asked, drawing an “I don’t know” in response to every single one. When Otto asked about an Immunology referral she said, “I guess you could do that if you wanted.”
After some strongly-worded pressure from Otto, Dr. BadHair agreed to have some blood drawn to “look at a few things.” She urged us to make an appointment to see the specialist in Birmingham, commenting in the same bland, bored tone that he probably wouldn’t be able to see us for six months, anyway.
All told, we spent six hours on yesterday’s excursion. The only tangible result was Chickadee muttering last night, “I’m just never going to be any better, and I guess I’m never going to camp, either.” I wanted to tell her she was wrong, but all I could say was that we’ll keep trying.
If I’d made this up you’d all tell me it was too ridiculous to be believed, and you would be right.
On the bright side: We did not kill Dr. BadHair. Or hurt her in any way. I am just making fun of her hair on the Internet, like a polite grown up. Because right now that’s all I can do.