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.)
(((Hugs)))
I supposedly have that allergy too. My derm was all “oh, it’s not a big deal, just wear sunscreen and take a benadryl if it’s really bothering you.” As if I’m not wanting to scratch myself to the point of bleeding every time I’m outside for more than 5 minutes. And that’s with sunscreen, mind you. It doesn’t sound like I have it as badly as Chickadee though, so I feel for her.
Low blood sugar is bad voodoo when you’re already stressed out about other things. Next time, lunch before the appointment!
p.s.-I hope y’all get answers. My daughter once had a mysterious allergic reaction. She blew up like a balloon from head to toe. Literally. Even the palms of her hands were round, like a cabbage patch doll. The best they could guess was that it was an allergic reaction to. . . . . .the cold! Awesome. It’s never happened again though, so who knows.
I live in British Columbia, and there was a family that immigrated to the north coast of the province from South Africa because two of their children had this allergy. We get a lot of rain and cloudy days on the north coast, so the children were able to live a more normal life then they could in South Africa. I’m pretty sure you don’t want to move that way, though, so I hope they are able to track down something else.
I also have a son that the doctors were testing for cystic fibrosis to try and determine why he didn’t have any vitamin B-12 – only to have me tell them that he didn’t have any because I didn’t have any, and he was solely breastfed. They still gave him any number of B12 shots until I could prove it.
My first thought was that – there isn’t sunlight during the parts of the year Chickadee doesn’t break out? Of course, I know that it is more intense in spring/summer – but really, it is intense all the way through October, so the poor child must only get 4 – 5 months a year freedom from this allergy?
Crossing fingers that “the mentor” will be Dr. House in disguise.
Thinking of you both.
I have the sun allergy – it mostly shows up on my legs. I carefully plan out my short wearing days because once the rash hits it doesn’t go anywhere in a hurry. My worst experience was on an all inclusive beach vacation – by day three I was in the shade, covered head to toe (it was ugly!) and passed out due to the large amounts of benedryl I was ingesting.
If it makes you feel any better I grew up in a desert with a backyard pool and lots of outside activities and I’m still alive ;) But my parents bought me a pony – maybe Chickadee needs a pony?
Keep us posted if you have any success – I could use some leads!
i have a sun allergy too. it showed up during college. at one point i had a prescription ointment for it. but these days it seems to be not as bad. i try to wear strong-ish sunscreen if i know i’ll be out in the sun for a while. if i forget 10 or 15 minutes after i come back inside i’m a itchy mess. good times.
I would have cried too…. and probably would have made a scene. I hope Chickadee’s allergy issue gets straightened out. Allergic to sunlight would be a hard one to handle. Good luck.
Oh sweetie. Maybe a shot of tequila to go with that chicken caesar?…
I like Ruth’s idea! Shots all around!!!
This day sucks. Can’t sugar coat it.
My mysterious allergy is that I’m allergic to myself! Yes, myself! I have what’s called a cell receptor antibody allergy where my body makes antibodies that the other cells are allergic to. Yay me. I get a nice set of welty hives if I get too warm (like while working out!), but they go away in about 30-45 mintues, as long as I cool down.
Hugs, Mir-family!
(((Hugs))). A good friend of mine has the sun allergy thing, and she says that her skin toughens up/grows used to it after a few weeks of summer. Of course, where she lives, that’s about how long summer lasts…
Mystery allergy in my family too. My youngest gets an all over rash that generally takes a steroid to get rid of. We did some basic allergy testing, but came up with nothing. Her pediatrician gave us a referral to an allergist but also said we’d probably find a whole lot of nothing for a lot of pain so since we managed to keep it at bay with the very easy steps of only using Dreft for anything that might touch her skin (so basically everyone’s laundry) and a twice daily dose of Allegra we haven’t pushed finding a cause.
After a day like yours, I’m afraid I’d have headed to IKEA for a double helping of chocolate cake and then maybe to Trader Joe’s for chocolate truffles.
Hugs and more hugs.
I’ve got the sun allergy thing, too. Some years it’s really bad, other years not so much. I get a zitty rash all over my body, so hooray for grey hair and zits at the same time, right? I thought there was supposed to be some sort of middle ground?
That sounds awful. Hugs to you and Chickie. Hopefully they will find out what is going on with her mystery rash.
I went on a cruise this January. We went to a lecture by a caucasian guy about Chinese Medicine. He had the same sort of issue, but only on the palms of his hands and was miserable. He went to dr after dr about it. Eventually he went to someone there in his town who practices chinese medicine and was treated with herbs he took in a tea a few times a day. He managed to overcome the condition in a few weeks. Since your dd is already a vegan, maybe the chinese tea thing wouldn’t be a difficult thing for her. Chinese medicine and teas have got to be cheper than allergists, right? Worth a shot, anyway.
Poor Chickadee. Hope they figure it out soon.
Sounds like a bad day in general. Hope that Dr. Mentor can pull a diagnosis out of somewhere, with no croutons.
Bad day dude. Sending positive thoughts to your family!
Responding to the Chinese medicine thing, at the very least, a good Chinese herbalist can give her a tincture to help with the side effects of steroids. I had to take LOTS of Prednisone and it makes me crazy, white hot angry as a side effect. Not good when I had two toddlers. But the tincture made that go away and it was such a blessing.
So sorry for your day. I’d be in a bad mood too.
Oh, Mir. What a craptastic kind of day.
We have multiple allergies here, but nothing like Chickadee.
You need a jumbo glass of wine and a large chocolate bar, STAT.
If this were facebook, I’d respond DISLIKE!
Have nothing to offer you but good vibes and hopes they find answers…REAL answers…soon!
Sending up prayers for peace, grace, healing and joy. We all need little joy, right? So I threw that in.
Comment No. 22 said it perfectly, so.. ditto. I’m sorry you and your family are dealing with all that mystery crap, hoping you find solutions that actually work and doctors that do what they say they are gonna do soon.
Poor Chickie! My sister also suffers. She uses vats of Bullfrog and has a fabulous hat collection.
Plain salad = lettuce What a doofus.
BTW – love the pic below
Dude, I’ve never read of so many people with allergies to the SUN
for heaven’s sake!!
I *always* order my ceasers without croutons, and I can even eat wheat! So…no, you’re not the only person on the planet who orders them that way.
I agree with others above – you need a shot of tequila, a side of bacon and better get to work on finding Chickie that pony!
K
ps- you’re not REALLY moving to northern Canada are you?! Hey, maybe you could be an Ice Road Trucker and blog about it?! That was my poor attempt at making you
laugh. Or at least snortle.
Good grief! I think you’re allowed to lose your crap under those circumstances. What a sucky, sucky thing. I’m hoping beyond hope it’s something she can grow out of (like Monkey outgrew his food allergies!). Until then, can you relocate to Fairbanks? (Sad attempt at sunlight allergy humor).
You know Mir, in my rule book, when the western medical community has no answers, typically the alternative medical community does. If this was my kid, here’s what I would do: I would go find a Naturophatic college and make an appointment with one of the doctors who teaches there, preferably one who specializes in skin conditions.
I can tell you many health stories about varies illnesses I have had and a few my child has had that could not be resolved by western medicine but responded just fine to alternative treatments.
Hope Chickie gets better soon!
While back there was an extreme home make over & the family had a daughter (I think about Chickie’s age) w/that allergy. Hers was pretty sever tho. One of the things they did was to put sail cloth over the pool (awnings) so she could swim w/her siblings. If it does turn out to be something like this, there are lots of clothes for people who can’t get too much sun (even for the very fair skinned) and there are still ways she can use the pool & such. Being the age she is, it probably won’t matter to her, but in the long run, things like still being able to swim will matter. (maybe you could make the awnings out of roof rats? too soon?)
I had a pretty severe allergy to metal & couldn’t wear jewelry because of it. My mom wasn’t getting me 14k gold ear rings in middle school, so I pretty much wasn’t wearing them. We found out about this allergy after I got my ears pierced. I produced much drama over my not being like everyone else & how awful it was for me. I was 13, so I hope you’ll understand. As, I’m sure you remember (now) it’s hard enough to be that age, much less to have other things going on.
Hang in there, you’re a good Mama. In the long run, you’ll figure this out & then you’ll figure out how to deal with this. She may not show it now, but in the long run, she’ll be so grateful to you for all this.
May I recommend carrying granola bars (or something along those lines) so you can avoid the low sugar thing? I forget to eat all the time, so I try to remember to throw one in my purse JIC.
Tears sprang to my eyes at the mere thought of having to endure all of that, and while you were STARVING, to boot.
Though I’m reminded of a friend who once heard that a burger chain was offering veggie burgers. She ordered one and got . . a bun with a piece of lettuce and a slice of tomato.
:-p
Poor Chickie. I have allergy to sunlight too. Since I was 9 and now I am 20. I really hope she doesn’t have it because it is not easy. And medication doesn’t help most of the time either. Plus I am born in a country where we have an all year round summer… I really hope she gets well and it is not allergy to sunlight… *hugs**
I have the sun allergy thing – it’s currently all over my arms and I look like I’ve got the plague or something. It’s most attractive.
As for your caesar salad – you definitely need a little somefin somefin to go with it…
hugs.
xo
LBC
You’re handling all the uncertainty much mo better than I would. I seriously would have gone postal. I hope you and Chickadee find answers soon. Hugs.
Well damn.
That’s it really!
And lots of hopeful thoughts for all of you.
Can I just ditto #22 (SillyMe)? ((((HUGS))))
Hang on…I’m coming…next time instead of driving straight home and eating at some stupid restaurant you will come to my house after the appointment and I will make you lunch. And a GIANT mojito. I promise. So sorry for Chickie! :(
Grr… No wonder you’re in a bad mood. You do need Dr. House, I think.
Re: the sun allergy. That sucks, but I can’t resist saying that I hope the end of this story isn’t that you’re all ghosts, a la The Others. I hope some of the new prescriptions work, and that you’re ALL feeling better soon. Without croutons.
I’m so, so sorry, Mir. Just keep positive and everything will be fine. Promise. I can’t understand why they can’t figure it out already. Poor, Chickie!
My ex-husband has an auto-immune disorder in which his body rejects his own red blood cells. WT? The human body has a very unusual sense of humour.
Best of luck with the docs and the allergy.
I prescribe a mojito, STAT!
No, I ‘m not a doctor, but I play one in people’s comment boxes.
Something in Chickie’s body is causing the skin to flare up. Perhaps treating the symptoms with drugs that are maybe masking the symptoms occasionally is just not the answer. Perhaps it’s time to get her to a Naturopathic doctor. Perhaps there is one that combines naturopathic and traditional medicine and can get a whole picture of your child better than the current system, which clearly is not working. I know here in Canada in certain locations, the demand to have naturopathic and traditional medicine to treat a patient side by side, at the urging of the patient AND the two designate doctors, is becoming more and more increased.
I wish you luck.
Re bad mood – I got a doozie today. Blah
I had some pretty serious allergies (not to sunlight) that were treated with NAET treatments…the allergies are now gone. I know that sunlight is one that can be treated, you’ll need to see if there’s a NAET practitioner in your area. I drove 7 hours for mine! It’s worth it though, if the allergies can be eliminated!
It suck to be having a sucktastic day… but look on the bright side, Chickie’s half-way to becoming a Vampire! Too bad there aren’t really any vegetarian vampires? Are there?
Hey, Mir…Karen is right. I was allergic to the entire state when we moved to TX. NAET worked when I actually had NO faith in it at all. It’s worth a shot. http://naet.com/subscribers/drnamerica.html Good luck!
Aw! I hope things get much better very soon in the health arena! I totally understanding breaking down and crying over not-the-problem. Some days the pile just gets too dang big!
Do you read Balancing Everything (formerly Very Mom)? She had a horrible, persistent rash. I don’t know if it’s like Chickadee’s horrible, persistent rash, but here’s the link to how she cured it. http://balancingeverything.com/2010/05/20/urticaria-and-angioedema-cure/
Just wondering… I’m not sure of all your daughter’s symptoms, but have the doctors considered mastocytosis? It’s a very rare disease. I have a friend who has the systemic version, and while not recovered, she’s made absolutely amazing progress with her health.
http://moonlightcocktailjohanna.blogspot.com/search/label/Systemic%20Mastocytosis