(The title of this post is a complete lie. There is no profit in poisoning your child which I can figure out, though if there were, I would be ALL OVER THAT, pronto.)
I’ve been thinking I may need a completely separate space to discuss Chickadee’s mystery skin condition—I’ll call it As The Rash Spreads, natch—because it occurs to me that normal people may not actually find my (*counting on my fingers*) four years of endless blather about biopsies and medications and sun sensitivity and whatnot all that fascinating. I KNOW, RIGHT? I mean, what’s NOT entertaining about a cranky child with undiagnosed, pervasive creeping crud? But still, I should maybe take it somewhere else.
Today is not the day that’s happening, though. Sorry. Because this week we went back to Emory (again!) and have a New Plan (again!). And I just know you want to hear every last sordid detail.
If you happen to be new here, welcome! And here’s your Cliff Notes version: Chickadee developed a skin condition when we moved to Georgia four years ago. She’s been through allergy testing, restricted diets, bloodwork, and literally years of specialists with no answers. It gets worse with sunlight, but isn’t a sun allergy. It gets worse with heat, but that isn’t exactly it, either. It has gotten worse every summer, to where she now spends most of the summer sweltering in long pants and long sleeves, on steroids to control it, which bring their own host of issues to the table. As of a few months ago, the entire pediatric dermatology team at Emory decided to stop looking for the cause and just treat the symptoms. After much consternation, Chickadee agreed to try an immunosuppressant which subsequently made her sick as a dog. A second immunosuppressant med seemed to be working better, but ultimately caused an allergic reaction of its own and had to be discontinued.
That brings us to this week. We headed in for our regular clinic visit, wherein “clinic” is Emory-code for “every doctor here will come talk to you in the name of learning.” So we saw every resident and every med student, and they all asked the same questions, and eventually the room was packed full of them while we all discussed the weird allergic reaction Chickie had had to the last med.
“Was the pill purple?” one of them asked. “We sometimes see a dye reaction with the purple pill.” I asked Chickadee, and she couldn’t remember. I thought the pill was kind of beige, myself, and said I was pretty sure it wasn’t purple. “Maybe not bright purple,” another one offered, helpfully. “Maybe more of a lavender? Was it?” No, I didn’t think so. Beige. Maybe sort of pink?
I just LOVE driving all the way into Atlanta in rush hour traffic to discuss what color my kid’s pills are, let me tell you.
The swarm of doctors left to go discuss. A few minutes later, the department head opened the door and peeked in. “Are you SURE the pill isn’t purple?” he asked. I laughed and said something about how really, come on, that would be too easy, and didn’t he know by now that Chickadee’s symptoms are never that easy? No, not purple. He laughed and backed out.
Eventually her main doctor came back and told us that we “still have options.” I decided that was good, because just leaving Chickadee on the side of the road, discarded and rashy, seemed kind of mean. “We’re going to try her on methotrexate,” the doctor continued, brightly, “and see if she can tolerate it. We’ve had a lot of success with this in my psoriasis patients, and in some of my unexplained cases like Chickie, too.”
Heyyyyyyyyyy, said one of my friends, later that day. Isn’t that, you know, CHEMO? Why yes. Yes, it is. But this is a much lower dose, so you know, TOTALLY FINE AND NOT AT ALL POISONOUS. Except that she was cautioned (again) that she can’t get pregnant while taking it. Which is fine. This one has the added benefit of a long lecture about how she can’t drink, either, as it can apparently completely fry her liver. HEY, I said, maybe ALL TEENAGE GIRLS should take methotrexate!
We went through the instructions, the paperwork, the prescriptions, and the many, many lab orders for the repeat bloodwork she’ll need… and finally (FINALLY!) we headed home.
Later that night, just for kicks, I pulled out the pill bottle containing the med that had given her the extra-special allergy rash. The bottle is amber, so I opened it to look at the pills inside.
They’re purple. OF COURSE.
Four phone calls and a rousing game of phone tag later (my first message left for them started out, “Hi, this is Chickadee’s mom, and I’m a moron!”), before we try the methotrexate, we’re getting a super-duper-special formulary dye-free version of that med to try. And if that works, it means that… she’s allergic to FD&C Blue #2, which may actually be part of the explanation we’ve never been able to get. Because although we’ve been pretty good about tracking her diet and keeping it pretty wholesome, SOMEONE has a not-so-secret Skittles-and-Tic-Tacs habit. Just sayin’.
I’m trying not to get my hopes up. But if you wouldn’t mind crossing your fingers, I’m sure it would make you even prettier.