Today we went back to Emory for the second time, to talk about Chickadee’s mystery skin condition. (Pretend that I linked back to the previous relevant posts on this subject. That will also require pretending I am not typing this in the car on my teeny tiny piece of crap netbook, and also that I’m a lot more organized than I actually am. And also that I’m in a better mood, which I’m not, which is also sort of the point here.) You may recall—and we’re pretending I linked to the post about—they’d put her on a new medication and I thought it was working right up until she busted out in a fantastic rash (right on schedule!) and she had to go back on Prednisone.
So today we farmed Monkey out to some friends and Otto drove us into Atlanta because I HATE driving in Atlanta and we spent a couple of hours with our friendly neighborhood pediatric dermatological specialists, and they had some really interesting things to tell us now that they’ve had some time to think it all over.
And we’re looking for some ANSWERS here, preferably, so I was READY. For ANSWERS. So it was all very exciting.
Spoiler alert: We still don’t really have any answers. (Does anyone have Dr. House’s phone number….?)
So today we learned:
1) They still don’t know what’s wrong with her. But…
2) … they are “leaning towards” polymorphous light eruption, which—if you don’t feel like reading up on it—basically is a catch-all term to describe a general allergy… to sunlight.
3) Allergy to sunlight? Like, SERIOUSLY? Yeah. But don’t worry! The nice young resident assured me that she’ll just have to “wear protective clothing anytime she’s outside,” which does’t sound bad at all because it’s not like we live in the south and she wants to be a normal kid who can go outside in the summer without a beekeeper’s getup on.
4) I learned I can listen to someone suggest that an allergy to sunlight is “not that bad” and not punch them in the face. (Self-control, I has it.)
5) There are actual sunlight allergy tests that can be done, but they are so highly specialized they don’t have the equipment to do them at Emory. So they would need to refer us out for those, if they decide she should have them done. Fabulous.
6) They forgot to run the extra iron tests they told us they were going to run, last time. Whoops! But she’s “on the low side of normal” according to the general test she had last time, so yay for no longer being anemic.
7) Sometimes “conditions like this” respond to a “heavy cocktail” of antihistimines, so we have five (FIVE!) new prescription to try. Too bad I spent all my money on getting rid of the rats, huh? I think this is about to get expensive. But at least we have no idea if they’ll actually help or not!
8) The doctor promised to take Chickadee’s case to the head mentor person. Except she promised that last time, too, and apparently didn’t do it. But this time we know more… except, wait, no we don’t. Nevermind.
And to think we get to head back in another 6 weeks to do it all over again! Lucky us!
We were there for two hours, over lunchtime (poor planning on our part), and so by the time they let us go we were all starving. We stopped at a Boston Market on our way back and I order a chicken caesar salad with no croutons. The cashier asked me about them several times, as if I was the first person in the history of mankind to ask for them to be withheld. I clarified that I can’t eat wheat and he nodded and we ordered the rest of our food and moved on.
The food took forever to come up (which is a puzzle, as the restaurant wasn’t busy, and it was about 2:00), and I opened my salad container to find… lettuce. Lots of lettuce. Nothing else, though. I was about to take it back up to the counter when the nice guy cleaning a nearby table asked if he could help. We explained the problem and he said he’d take care of it; he took my salad away and came back a moment later and asked to see our receipt. Upon examination he pointed out that it looked like we’d ordered a plain caesar salad. I pointed out that even if we had (we hadn’t), I was pretty sure that would still be more than a plastic box full of lettuce. He went away again.
Otto and Chickadee began eating, at my urging, while we waited. Finally he returned with a salad, put it down in front of me, and we thanked him profusely and he left. I removed the lid to find… a chicken caesar salad covered in croutons. Of course.
At that point, I did the only logical thing I could think of: I burst into tears, much to the consternation of my husband and daughter.
“It’s fine,” I sniffled, “It’s just… they’re all crumbs… I can’t pick them off… and I didn’t tell him, it’s my fault….” I continued to quietly lose my crap (though never once giving voice to what was actually bothering me, which was more along the lines of “MY CHILD IS A MEDICAL MYSTERY WHO IS ALLERGIC TO LIGHT!”) while Otto went and got me a salad I could actually eat. I was really embarrassed and I’m sure whoever made it probably spit in it, but by the time I got it I was too hungry to care.
Now we’re on our way home and I am no longer hungry but I’m still pretty crabby. As is Chickadee.
Poor Otto. (I’m glad they didn’t screw his food up.)