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.
Ugh, frustrating! I want to give you a cookie, but I know you couldn’t eat it. How about a virtual cookie and a hug? Look, no calories in it, either!
Okay…I’ve got a severe nickel allergy. Severe. Worst case the allergist had ever seen and we only diagnosed it with the expensive patch test. They had to order the pure nickel substance (it looked like vaseline to me, but what do I know?) from Sweden.
By the time we got the patch off, I had a reaction that spread everywhere.
However. I’ve never experienced a sympathetic reaction that lasted for months. I’ve had only one, after trying to wear my watch again. The watch that hadn’t bothered me until I had the nickel patch test, which apparently, re-sensitized me to nickel. Or something. After a while, the allergist/dermatologist just sounds like “Talky wordthings talking talkiness” to me.
I’ve also never had my rash recur for years, and only in one season of the year.
Skin stuff is very frustrating…I’ve got three kids with uber sensitive skin and one that’s allergic to all petroleum products.
Hang in there…it took years to lock down some of our family’s allergy issues, but we did.
I’m assuming they’ll refund your money for the less accurate Nickel test? As if.
Sorry you’re all going through this. I hope someone figures it out soon.
Our bodies are wondrous and magical things which medical science has yet to master. Medicine is still part art.
Hang in there, kiddo. I feel for you both.
So now, not only do you not know what it is, but you’re not even sure anymore about what it isn’t? Whaaaaa? Maybe does Chickie want to be a dermatologist when she grows up? Because that might be faster.
Sending nickel-free hugs and happy thoughts your way!
This is beyond ridiculous. Poor Chickie, and poor you guys.
Holy frick. Poor Chickie. Crossing fingers.
Acupuncture? Chinese medicine? Grasping at straws and chicken entrails — or whatever the vegetarian equivalent is?
If it is nickel, what then? She only spends money via credit card? Seriously, it’s a pretty easy allergen to avoid, stick with no zippers/snaps/metal buttons. Don’t wear any metal jewelry. I’ve dealt with this for years. If they think that is the cause, they should give you that info, not just steroids, even while waiting for the test results. On the plus side, if it turns out this is her issue, she can use that as reasoning to always request fine rather than costume jewelry. Skin issues suck, and unfortunately, so many of them tend to be chronic.
Have the docs ever suggested Sebhorraic Dermatitis? I don’t want to leave a gross description in your blog, but check it out. It’s another problem I’ve had for years, just in my ears, but it can happen anywhere on the body. The cause isn’t clear for me, but sometimes is for others. I get it when I’m stressed, when it’s hot out, when it’s dry out and sometimes just because I’m breathing. The treatment is a simple prescription cream, and a steroid when it gets really bad.
Ummm… what’s the point of ANY…”LESS ACCURATE” …test. Isn’t that ridiculous.
So, what… now whenever we go to a Doctor for any testing, do we need to say… “Hey, can we use the most accurate test right off the bat? You know, to save time? “.
Hope you get your answers finally. SHeesh!
All I really have to say is a sympathetic “BLEEEEEEEERGGH!”
Great goodness poor Chickie and poor you!! Also, the next time you are at Emory, give me a call and I’ll take y”all somewhere fabulous for lunch!
3 years I dealt with my baby’s excema that could never be controlled. 3 dermatologsits, 2 allergists, and a plethora of fancy lotions (including one with a $150 copay) couldn’t control it. Finally, we meet an allergist who spent an hour with us and said “Vaseline”. Imagine my shock when it worked within 3 days! He is now rash-free for a year and we have alreayd started treating his little brother proactively.
Not the same but I’m sure hoping the “ah hah” moment comes soon for your family
I was gonna suggest Sebhorraic Dermatitis as well. I have it in my ears, behind my ears, and on my scalp. So, I dont actually know what it looks like. I use a topical steroid solution. It would seem that even if they don’t know what it is, and steroids help it, why can’t they give you a topical treatment that might affect her personality less? Bathing in it might not be fun, but better than crazy Chickie?
Ready to try the kinesiologist yet? I hope she gets some relief soon!
I don’t want to scare you or add to the freak out, but have you talked to the doc about the side effects of long term use of Prednisone? I know that it can severely weaken bones. My grandfather was one it for a while and it lead to very weakened bones and stress fractures. Of course Chickadee is much much healthier and younger and more spry than my grandpa – but just wanted to make sure you knew.
Good luck in the continued quest for answers.
Cyber hugs your way… Well, if you need a different “specialist” you can come down to Shands at UF and I will have a great time hosting “our” Mir and crew.
Gah! Are you serious? Poor Chickie! I’m with everyone above who wonders why on earth they would have used a not-so-accurate test in a situation like this. It must be the expense, but how completely MADDENING. I wonder if pegging the doctors with actual nickels would help? I’ve got a whole jar of change I can donate to the cause.
Did she have a rash at her father’s too? Or maybe it’s possible to say because she was on prednisone… Did the allergy start during your first summer in Georgia?
Since you use the pool during the summer only and that her rash arises during the summer too, could it be she’s allergic to some product you’d use to clean the pool?
I suppose you’ve already ruled out an eventual allergy to your washing powder?
That is horrible. What in the world is going on with our medical industry? I drive an hour and half to an endro doctor because there is only one in my city and he’s awful. I hope chickie feels better soon and they finally get to the bottom of this…this is crazy.
Tell Chickadee I send hugs and thoughts/hopes of a rash-free July her way.
Gaaaauuuuuggghhhhh! Just my sympathetic mom war cry. Feel free to break it out at your next doctor appointment.
Is there something the town/county puts in the water during the summer months? Does it make sense to have her drink only bottled water and see if that has an impact?
Poor Chickie and poor Mir. Good luck.
Well, at least she likes the hamster-bubble thingy. That way, making her stay in one won’t feel like torture.
Skin issues are a total b@#$& to diagnose. I tried to get my husband to go into derm, but he refused saying it was too complicated of a field with too much guesswork.
If you want an appointment at an allergy and immunology practice in NYC, I would be happy to get you in… I really respect the MD I work for: impeccable credentials and holistic at the same time…
big sympathetic hugs to both of you! Two of my kids had a mystery rash that was thought to be molluscum. Lasted for years, cleared on it’s own in one child (the one with eczema and food allergies, no less). Fot the other child, someone suggested using “Hibiclens” after her showers–it is sold at Walgreens’/CVS, etc. and is in a blueish bottel and looks like a bottle of betadine. It is a surgical prep wash and it takes a tiny bit after normal showering is done-just wash it around and rinse. ANYWAYS—within two days of using it, the rash was completely gone. It flairs up once in a blue moon and a quick wash for a few days sends it packing again. We still do not know what causes it but after almost three years with a painful, bumpy rash, we have a solution. Might work for you guys!
Hope you find your answer soon.
Yoy. I don’t envy you. I just went for food allergy tests yesterday and found out what I already knew.
A few years ago, I had a wonky rash. The doctors couldn’t figure out what it was, but ran tests and bloodwork and stuff. It was something they’d never seen before (which is comforting) because if I scratched my rashless arm, a rash would appear instantly. It worked with the tip of a closed pen. Blood tests showed no allergies or infections or anything. It would go away at night and start up in the morning. And each day got worse.
EVENTUALLY, I figured out that it was a heat rash. I bought an air conditioner and haven’t had a problem since.
(I’m assuming my rash and Chickadee’s rash are not similar in the least, but it wasn’t going to hurt anything to mention the wonky weird heat rash.)
Uh – poor thing. Sorry you’re still going through all of this. :(
All I can suggest is what our wonderful allergist suggested to us…Jewish National Hospital in Denver, CO. They do skin issues(along with a few other things). Boy, their procedures changed my son’s life.
I was getting hives and eczema on a weekly basis for awhile. After a battery of tests, the allergist declared I wasn’t allergic to anything, just “sensitive” to chemicals/sun/dust/weather. I stripped the house down to bare wood floors, gave up heat-based jewelry work, and hired a cleaning lady who only uses vinegar and microfiber cloths. My skin cleared almost instantly. I refuse to be one of those people wandering around in a mask,but I do avoid toching my bare skin to anything, enclosed spaces that use industrial cleaners,
Doctors are fun aren’t they. I was sick for 3 years in high school head aches nasuea stomach pain dizziness extreme fatigue. Every single specialist I went asked if I was pregnant after the first few months I wanted to hit them. Yes I’m pregnant and my morning sickness has been going on for the past two years. Eventually they decided to just give me anitbiotics for several MONTHS to see if that helps. When that made me worse they did a blood culture they found bacteria in my system that was growing off the antibiotics. So they gave me new stronger antibiotics. This made me better buy know I have to explain to every new doctor I see that I can’t have amoxicillin.
No advice, no stories of rashes, nothing but heaps and heaps of sympathy. And some mild but surprisingly violent feelings towards doctors who think another round of steroids vs actually SEEING someone is a good idea!
This is going to sound weird, but if you feel like taking a week-long vacation to a beautiful part of Colorado, there is a chiropractor here who is fabulous with allergies. He is an electrical engineer originally and his technique is called electrical medicine. I can’t really explain quickly what he does, and it is unique to him, but he has cured me of 49 years of seasonal allergies that were becoming not so seasonal. I know several people who have had very good luck with him. I went into it the most skeptical person in the world, but there’s definitely something to it. And all of it is medicine free! If you want more information, let me know.
A big huge sympathetic hug.
I developed an allergy to chemical sunscreen when I was about 13, getting a horrible rash that looked like poison ivy everywhere that I put the sunscreen and subsequently exposed to the sun. And since my skin without sun exposure is approximately the color of whatever the palest, moon-white makeup shade you can find, it burns in about 5 seconds. Zinc oxide based sunscreen has changed my life! (Thank you, VaniCream Sport!)
You might want to see if the reader who suggested Sebhorraic Dermatitis is onto something. That translates loosely into dandruff of some hairless part of the body, and a little bit of washing with dandruff shampoo seems like a fairly inexpensive and harmless experiment that might help. (I had that around my nose as a teen. How awesome is adolescence?)
Our 2 yr old had a mystery rash about a month ago. It lasted for about 2 weeks. 1 week into it we took her to the doctors to have it checked out. The doctor wasn’t sure what it was but narrowed it down to 2 or 3 things. Then he had the other doctors from the office come in and check it out as well. The debate raged for awhile with no real answers. The doctors said they do that all the time with skin conditions because there is so much variety to them from the little ones. It eventually just went away on its own.
Battling my own mystery summer rash for the 4th summer now. Found some interesting suggestions from http://www.earthclinic.com Trying the organic apple cider remedy (externally and internally) for the past couple days with some success. Hope you find something that works quickly, for both of your sakes!