It’s nearly July, in the third summer of my daughter’s Mystery Rash Saga, and we are still stumped. When we last left off, the doctors suspected sun allergy, but then in a follow-up phone call amended that to “maybe it’s just a sensitivity to chemical sunscreens.” We were instructed to ditch our old sunblock and buy only the kind that uses a physical barrier rather than a chemical one, and told that within a month we should see an improvement if one was going to happen. We dutifully replaced all of our cheap sunblock and crossed our fingers.
As soon as Chickadee finished the last round of Prednisone, the rash came back. Again. So I called our crack team of specialists, again, to say “Oh hi, my kid has been on Prednisone three times this summer already and not only have the effects on her personality been TOTALLY AWESOME, she’s actually still covered in a scaly rash, so hey, how about we try something else?”
So it was back to Atlanta today for another shot at deciphering the Mystery Of Itchy Girl.
Just to recap, we have—over the years since this began—now been told it could be:
1) Sunscreen sensitivity.
2) Sun allergy.
3) Siblings born too close together.
4) Nickel allergy (she tested negative but did test positive for cobalt, of all things).
5) Random food allergies.
But as it happens, none of those things have been definitively proven. Yet.
So when I called Emory yesterday I got a call back from a nice Resident, because our doctor is on vacation. And the conversation went like this:
Her: So, Chickadee is rashy again?
Me: Yeah, pretty much as soon as she finished the Prednisone the rash came back.
Her: I see. So you want more Prednisone?
Me: Um. Well, no. I mean, we HAVE more Prednisone; the doctor wrote us a prescription for enough for a few more tapers, last time. I just thought you might like to actually SEE her while she has the rash…? She’s been on Prednisone the last two times you saw her.
Her: Oh. Well that might be… hmmm. When’s your next appointment?
Me: Not for a month.
Her: So, if she did another round of Prednisone, you feel reasonably confident that by then the rash will be back again?
Me: Well, yes, but…
Her: So then she could have the relief of the Prednisone now, and we could still see the rash in a month!
Me: Yes, but wouldn’t you rather see it SOONER and maybe get closer to DIAGNOSING it?
Me: I’m just… look, I’m frustrated. I’m not complaining, because I know this sort of thing is hard to figure out and I know you’re all working on it, but this is the THIRD YEAR she’s gone through this. Could we, I don’t know, just not waste another month if we don’t have to? Can someone see her now, see if we can get closer to figuring this out?
Her: Hey, that’s a good idea. Let me talk to my supervisor.
Me: Great. Thank you.
She called back ten minutes later and gave us an appointment for this morning. So apparently SOMEONE thought seeing her was a good idea.
The bad news is that her “regular” (if you can call two appointments regular) doctor was on vacation, but the good news is that the doctor who saw her is actually the doctor we’d been referred to and couldn’t get in to see, originally. This doctor has more experience and came highly recommended.
And she came in and did her thing and said that…
… she thinks it’s a nickel allergy.
[That loud noise you heard this morning was my palm smacking my forehead loudly enough to create a sonic boom.]
Us: But Chickadee was already tested for nickel allergy!
Her: That test isn’t entirely accurate because blah blah blah and if you got a positive for cobalt, chances are very, very good she is indeed allergic to nickel as well.
Us: But it only happens in the Summer!
Her: Reactions like these can morph into “sympathetic” reactions on the rest of the body, and those types of reactions tend to be exacerbated by warmth and sweat.
Us: BUT THIS DOESN’T MAKE ANY SENSE!!!
Her: *nothing, because I only screamed that in my head*
So. We’re off to do another nickel test. A “more accurate” one.
I asked Otto afterward, “So, wait, what’s the game plan if it’s NOT nickel?” I thought maybe I’d sort of missed it in the shuffle. But he agreed that that wasn’t discussed. And we go back in a month, either way.
Three years, people. Three years my child has suffered all Summer long and my faith in the medical community is waning, I’m not going to lie.
While off on vacation with her dad, Chickadee went to a theme park where her favorite “ride” was giant hamster ball looking things they’d put you inside, inflate with air, and then let go across a large pool of water. Her dad took a ton of pictures and she later sent them to me; it’s a series of my baby in a big plastic bubble, looking perfectly content as she rolled around.
I am nearing the point where keeping her in such a device 24/7 is starting to sound perfectly reasonable, and I can’t be certain, but I suspect that’s NOT GOOD.