(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.
Here’s hoping she’s allergic to blue, I guess!?
Agreed, hoping she’s allergic to dyes. Or maybe the pill canister?
Fingers, toes, and eyes crossed. I will be bumping into stuff just for you!
My girl is allergic to E500, nasty, itchy rash, no brightly coloured sweets for her.
My guess at this point is that she’s allergic to air.
All fingers crossed, and toes for good measure!
definitely hope it’s the blue. I take methotrexate, and while it’s better than the symptoms it treats, the side effects are not good times. And though I know Chickie detests needles, the injectable methotrexate has none of the gastrointestinal side effects that the pills have – it’s lots better, once you get past the teeny, tiny needle.
Wow! I hope it’s just the food dye that’s been the problem.
Consider them crossed! Giving up Skittles and Tic Tacs seems like a small price to pay.
Hoping that your oldest is allergic to blue (in the nicest possible way)
Crossing my fingers!
Greg is coming to Atlanta on the 30th. Sounds like that would be a football game night for you?
Let me see if i have this straight… you are treating / trying to ID and avoid- an allergic reaction to the meds that are supposed to help with the original overall allergic rxn. Nothing like life making it easier on you guys for once… :/
Still pullin for you’ns.
Wouldn’t that be incredibly wonderful and easy? Well, relatively easy? Here’s crossing fingers and toes.
Why is the song “Roller coaster” singing in my head??
Wow. How insanely simple-yet-how-could-anybody-know? would it be if it were a simple food dye allergy?
I have a friend whose kid is allergic to the purple dye they put in children’s Benadryl. Benadryl being, you know, the medicine they give to children having allergic reactions. The irony! I never thought to ask her how they ever managed to figure that out.
Anyway, here’s hoping Chickadee’s Mystery Issue is on the verge of having a diagnosis.
Maybe if it’s blue she could switch to chocolate…
I don’t have anything to say but good luck in your newest attempt to figure all this out.
If she is allergic to the colourings in tic tacs let me know and I can send her some UK tic tacs. They don’t taste exactly the same (due to the flavouring) but I’m pretty sure they don’t have FD&C Blue #2 :) (I can double check next time I’m at the supermarket.)
hoping it’s just the blue dye!!! i would have remembered it was purple, simply because it’s my favorite color…just sayin’
;-)
One of my daughters had a mad allergy to red dye. The kind they used to put in the OTC kid-strength analgesics. The stuff you give them after innoculations. I discovered this when she got her MMR shot at age 1. At 3 o’clock that morning she whirled around the living room like a demented, but very happy, dervish. FOR. 3 HOURS. Fun times!
Here’s hoping it’s the FD&C Blue #2 causing the problem. ‘Cause otherwise, I highly suspect Chickie’s allergic to Georgia itself. Which would be no fun at all.
Um, skittles and tic tacs? Have you tried eliminating citric acid? Because that can cause skin rashes! And it’s in nearly all candy and most baked goods. Just saying.
I know it would be huge and emotional since it began “when we moved to Georgia four years ago” have you considered having her spend a longer period of time with her dad (if he is back where you moved from) to see if the symptoms go away?
Definitely crossing my fingers hard hoping it’s the Blue!
And then you can shop here:
http://www.naturalcandystore.com/
At the risk of being a total hope squasher…
Why would a food dye allergy get worse in the summer? Unless she has a (actually secret) addiction to blue slushies. Don’t tell me they’re “blue raspberry” – no raspberry on this planet has ever been that shade, and it doesn’t taste of raspberry, it tastes of BLUE.
Sorry. That’s my issue!
Crossing my fingers that it’s blue! How awesome would that be to finally figure it out!!
But, if this is a summer rash, would you say she doesn’t eat Skittles and tic-tacs in the winter months? No Halloween candy?
Sorry for raining on your parade. :(
Nah, y’all aren’t raining on my parade. Whatever the rash is, it’s definitely aggravated by heat/sunlight. Part of the diagnosis issue is that it’s clearly a multiple-cause thing. So it’s possible she has an undetected allergy AND she is heat sensitive, for example.
Even if the dye isn’t the answer, the purple pills didn’t have any side effects in the week that she took them… which means MAYBE they’ll be a good solution in the dye-free form if that was the problem. We’ll see.
Ooh – and if it IS Skittles then Chickie can totally stage an emo protest outside the candy factory – ‘why, Skittles? WHYYYYYYY????’ At least, that’s what my angsty teen would have done!
Oh goodness, that made me laugh out loud in one of those, “OMG, I’ve had to make the moron phone call before and really isn’t it always just something silly like that?!?!?”. I really have everything I can have crossed that it is a #2 allergy and hope things clear up for you all. Also as a side note I’m always thrilled to read about how much relief Hippie School is giving you. Makes my heart happy for you!
I’m crossing my fingers. It would be glorious for her to finally have the chance to be rid of this! Can’t wait to hear how it turns out!
Well then I am stunningly beautiful because I’ve all fingers, arms, toes and legs crossed. I’ll even cross my eyes (will they really stay that way?)
Lesson learned — always bring her meds with you to Emory — so if you need to you can throw them at their heads. Or you know, just carry a recent copy of a PDR with you.
Barring that, here’s hoping that your non-purple pills work!
But if she is allergic to this dye — will you get to tell her “Put down the rashy Skittles and eat something better for you like cake batter or cookie dough?”
(My son says of course she’s allergic to blue, she’s a girl.)
Poor baby. Two things – I’ve never understood why they allow dyes in medicine, especially since everyone has pretty much figured out that they are more or less toxic. Sometimes fatally toxic! Awesome! Kids aren’t going to like taking medicine, no matter what color it is, and you just have to get them to take it for their own good. Second – if it’s a MEDICAL clinic full of DOCTORS and medical students, wouldn’t they know what she’s taking and have a freakin’ textbook or manual containing all known medicines? Which would list the color of the med??? Surely that information is written down somewhere, in a CLINIC. Or they at least could have done some research on their own and not relied on the patient to tell them what color the pill is. I don’t know…just seems like piss-poor management on their part!
D’s MTX is yellow, but tiny, with 2.5 mg per pill.
Did they mention twice a month blood tests? More needles? Fun! And don’t worry about that liver issue, it’s RARE. (Do they realize they’re speaking to a parent whose kid has a RARE DISORDER? I think not.)
But it would be awesome if this turns out to be the answer.
I’m not only pretty, I’m adorable and I WANT THEM TO FIND OUT CHICKIE’S ALLERGY TRIGGER, so I’m really hoping this will do it. Wouldn’t that be nice. ALMOST worth the four years of trauma, drama, and itch.
My husband took MTX for a while to help with his psoriasis. It was better than the Psoriatain (my God that stuff was awful!!), but the when a blood test came back abnormal and I had to take him for a liver biopsy, well, that was about all I could take. Now he takes an injectible immunosuppressant, and it has been a miracle!
I hope that Chickie is allergic to FD&C Blue #2, because I would not want to the be the mother of a child taking MTX if I didn’t absolutely have to. It was bad enough being the spouse.
Hey Mir, I have rheumatoid arthritis and have taken methotrexate for almost three years. It sounds like a scary drug and I was terrified to take it but it gave me my life back. I hope the dye free drug works for Chickadee but if it doesn’t, I just wanted to be reassuring about MTX.
I’ve never trusted blue. Fingers crossed!
Here’s hoping this helps!
And for what it’s worth, I don’t think you need to take The Rash Spreads saga off this site. It’s part of your life, I think it’s interesting in a perverse way. Well, not perverted, but in a I-feel-bad-about-being-interested-by-Chickadee’s-rashy-misery sort of way.
Oh Mir, I hope it’s the food coloring!
My fingers are crossed but don’t tell me I’m pretty.
As an adult who has the mystery rash that won’t go away, I sympathize with Chickie over the miserable factor.
All the things that make it better, are all things I’ve discovered outside of the doctor’s office. I didn’t know this, but apparently you’re not allowed to have eczema as an adult if you never had it as a child…who knew?
All I know is stress makes it worse, heat/sweat definitely makes it worse (I live in Houston, summer is miserable), and the only lotion that helps is one that is primarily coconut oil. Eating non-processed foods also helps, which makes me think there is an allergy component in there as well.
Condolences on the never-ending saga….
Everything is crossed, and I don’t even care whether it makes me prettier or not!
Allergy to Georgia?
Fingers crossed & more!
“maybe ALL TEENAGE GIRLS should take methotrexate!” Ha! Excellent conclusion! :)
Also: “But if you wouldn’t mind crossing your fingers, I’m sure it would make you even prettier.” Well, I’m already pretty, nay, strikingly beautiful, so I’ve decided that having all my bendy things crossed for Chickadee will make me even more RICH! Yes.
Seriously, I’m really, really, really hoping they find a way immediately to rid you of this plague, Chickadee. What a nightmare to deal with.
Dr. House! Paging Dr. House!
I HOPE this is the answer you need. Fingers, toes, and eyes crossed!
You’ve probably already seen this but just in case: http://www.allergicchild.com/food_dye_allergies.htm
As a mom, I have a talent you’re overlooking.
I will cross my boobs for you. :-)
I hope it’s an allergy to blue. All crossable appendages are crossed. And ditto Kate in MI
Giving up Skittles and Tic Tacs means … More Chocolate!!! Hoping she’s allergic to the blues.
pleasepleaseplease let it be food dye allergy!
Ok, even if she is allergic to dye and it is only part of the puzzle, at least it would be one part figured out making it easier to determine the other causes. So I am really hoping you have at least a partial answer.
Here’s hoping this really helps! How awful for both of you to live with this for 4 years!!
Here’s hoping this one works. And Another Dawn — I had the exact same experience with my youngest — bouncing off the walls all night after liquid Tylenol. She went on to have several ear infections, and I always had to request the pills rather than the liquid (which had the same dye) which I would crush into applesauce.
Either she eventually outgrew it, or the problem dye is only in medication, because it was no longer an issue by the time she was around 3. This is the same child I had to give up chocolate for during her first year, because if I ate a single piece, she was up all night. The greatest sacrifice I ever made for my children… :-)
If that’s the case, then Chickie can say she’s allergic to blue!
Keeping my fingers crossed. Heck, I’ve crossed my apparently freaky toes for extra measure. (I guess most people can’t cross their toes without help…? I mean, both the big over the index toe and the index toe over the big? Yeah, so…here’s me doing that for you.)
Don’t apologize for writing about this here. We are all so invested in this story by now that updates are much appreciated!
I think it’s hilarious that during all that questioning about the color of the pills no one just called the pharmacist to ask.
But… but… doesn’t blue food bestow immortality? Oh, wait, that was a purple bill, not blue food. Oops. My bad.
Here’s hoping that getting rid of the blue gets rid of the dermatologic blues.
Everything crossed in hopes of a blue allergy. I lived for many years w/the “we don’t know,” which eventually turned out to be Fibromyalgia. I don’t envy either or you. Mostly, I just hope for relief for both of you.
All fingers totally crossed. And please don’t stop posting these updates. I so hope they work out what’s wrong with Chickadee’s rash.
Good . . . luck?
And I never mind hearing about clueless doctors, it makes me feel not so alone, so don’t stop. ;-)
Totally crossing my fingers. I have 2 boys who can’t have red dyes, especially #40. I still have no idea why these companies insist on these artificially made dyes in just about everything our kids consume. Ever try to find a med OTC or script for a kid without red dye? Damn near impossible.
All of that and the answer could, potentially, be that simple? Blue? Oh for Pete’s sake.
I agree, if we didn’t want to know about your sweet girls skin condition I don’t think we would be coming here. All of it is part of your life.
I’ll say a prayer for her and cross my fingers it’s the dye she is allergic to. Poor girl. Will this make it so she can’t have her skittels and tic tacs?
I blame the Smurfs.
I hope it’s the case that she’s tangled up in blue. Then she could take the (dye-free version of the) medicine that works, and it would help with the primary skin symptoms and she’d feel better. I am so sorry it’s so complicated… and this is all for your “easy” child (ha!)
Also? This typing with my fingers crossed is so hard. But never fear, I’m keeping them that way.
I think you should keep it on this bog. It’s a part of your life. Here’s hoping things go better for Chickie!
Oh, cross, cross, cross! Don’t move the topic – how else are we supposed to direct our internet karma her way?
as a pharmacist i am appalled that not one of the md-type beings thought to pick up a phone (or delegate a phone call request to a lesser mortal.)
I have no problem with taking those calls!
I do hope it is as easily solvable as that
Who’dathunk it might be a dye thing?! Wow … I hope this go-round proves fruitful!
I took Methotrexate when I had an unfound ectopic pregnancy! Funny (kinda?!) story … they knew I was pregnant, but couldn’t find the embryo. It was not in my tubes (though the male ER doctors wanted to jump right in and take those out just to be sure … no thanks MR dr!!). I had a wonderful team of women doctors who decided I needed to keep both tubes as I was an older person trying to have a baby. So … they jumped on the ‘net and found that methotrexate would stop the division of cells regardless of where they were. At that time (about 15 years ago), they had to bring the drug in in a lead-lined case and it was a HUGE deal when they gave me the shot! Anyway, I had to have blood tests every day for awhile and eventually the embryo went away. Still don’t know where it was, the MISS doctors said it could have been anywhere, even in my abdominal cavity! Crazy!
Anyway … just thought I’d share!
xoxo,
k
Embrace all the streams of doctors. I am a firm believer that eventually someone will see Chickadee, hear her story, and proclaim (in a loud, authoritative voice) “I know what that is!”
In the meantime..Go blue! No really, go. Go away, blue.
Crossed all over the place going on here :)