Yesterday was a no good, terrible, horrible, very bad day, and every time I think about it I get mad all over again. It was the sort of thing where I couldn’t help just stepping outside of myself, mentally, even WHILE it was happening, and thinking, “If I wrote this up as a fiction story people would be all, ‘Yeah, it’s just not believable, I’m sorry.'”
Like that.
So I am too lazy to find the old posts and link back, but for anyone who’s new ’round these parts, my darling daughter has some sort of chronic skin condition that she developed when we moved to Georgia which has been steadily worsening ever since. We are about to begin The Four Summer Of Mystery Rash, only this year as a SPECIAL ADDED BONUS, Chickadee busted out the rash in December (the earliest yet!) when she had the flu, and though we sort of contained it for a while there, she came home from her band trip with a full-blown rash, as well.
We see a team of dermatology specialists at Big Atlanta Medical Center who supposedly Know Things, so we’d called to let them know what was going on, and yesterday morning they called and said “Can you be here in two hours?”
So we dropped everything and went. It’s a 90-minute drive for us, so saying that we dropped everything is pretty accurate. Off we went, winding our way into the big city.
I’m pretty sure that we’ve seen the entire dermatology department there, and because it’s a teaching facility that means we’ve also seen a bunch of med students and residents, which is fine. The more the merrier! Maybe someone will figure it out, right? Our original doctor assigned to us there was very nice and earnest, but after ruling out nickel allergy, sun allergy, photosythnasomething and a few other things, referred us to the department head. He’s the one who put her on a cocktail of allergy medications that have lessened the severity and frequency of her outbreaks, somewhat, but we still don’t know what’s wrong with her AND the allergy meds that were helping, before, seem to be doing diddly squat, now.
Anyway, when they told us to come in, it was to see a third doctor there. I thought we hadn’t seen her before, but apparently one time I let Otto take Chickadee to a checkup there without me, and they’d seen her, then. Me, I had to choke back giggles when Dr. BadHair finally walked into the room, because HOLY HELL LADY, WHAT DIED ON YOUR HEAD?
Catty? Yes. I’m sorry. Except that I’m not. We drove 90 minutes into Atlanta and sat and waited for over an hour, and when we were finally brought back into an exam room (where we waited another half an hour), we came face to face with a woman in her late 50s who had an asymmetrical, pointy haircut in three different colors (black, blond and reddish). It might’ve been cutting-edge punk on a woman a third her age, but on her—against the lab coat and sensible loafers—it was merely terrifying.
And had she done a single thing that was useful, I would not feel the need to tell you about her atrocious hair. But given that I am a shallow, petty individual who is FRUSTRATED BEYOND BELIEF, you betcha I feel the need to tell you exactly how fashion-challenged she was. Maybe all the hair dye had addled her brain.
Dr. BadHair: So I see that you called in because Chickadee has a rash again.
Me: Yes, usually it doesn’t start up again until Summer, but she got a little sunburned on her school trip and it’s really bad again. We had to start her on Prednisone.
Dr. BadHair: Prednisone clears it up?
Me: Yes, she generally responds well to it. You can see where it’s already starting to kind of flatten out and fade, here and here and here.
Dr. BadHair: I see. And this happened when she got sunburned?
Chickadee: Yeah. Just a little, though.
Me: Right, see, just her nose is still a little red. She just got a little burned on her face.
Dr. BadHair: Well I think it’s pretty clear we’re looking at sun allergy.
Me: Um, the team ruled that out last year.
Dr. BadHair: But she developed a rash after being sunburned. It’s pretty clear.
Me: Yes, and as you can see from her file, sun definitely exacerbates her condition and always has. But she burned her NOSE and developed a FULL BODY rash. Does sun allergy typically present like that?
Dr. BadHair: No, usually only on the exposed areas.
Me: Right. Well, she burned her nose and has a rash behind her knees. So.
Dr. BadHair: Were you wearing shorts?
Chickadee: No, I was wearing long pants. No sun on the backs of my knees or really anywhere else that I’m rashy.
Dr. BadHair: Well, that is unusual. But she only gets rashy when she’s in the sun.
Me: No, remember I called in when she got the flu and got a rash. I was hoping that was some sort of clue. In fact, that’s why we’d like to see someone in Immunology.
Dr. BadHair: That rash was a fluke. You don’t need Immunology, I mean, allergies and skin conditions are immunological issues, too.
Me: Wait. That rash was a fluke?
Dr. BadHair: Yes.
Me: How do you know that? She got very sick, she got a rash. That seems important, to me.
Dr. BadHair: No, I don’t think it was. It was a fluke and we have to rule out sun allergy.
Me: Ooooo… kay. How do we do that? I mean, I thought we already had, so what do you suggest?
Dr. BadHair: Oh, we can’t test for it here. There’s a doctor in Birmingham who can, though.
Me: You want us to go to Birmingham?
Dr. BadHair: If you want to have her tested, yes.
Me: Even though her symptoms don’t fit with sun allergy?
Dr. BadHair: We don’t know that. Birmingham would be the place to go.
Mind you, throughout this exchange, Dr. BadHair spoke quietly, mildly, as if we were discussing the weather on a particularly boring day rather than talking over my rash-covered kid who was lying there on the table between us, trying not to scratch.
Me: Okay, well, we can certainly look into that, I guess? What do you suggest we do in the meantime?
Dr. BadHair: I don’t know.
Me: You don’t know?
Dr. BadHair: No. I’m stumped.
Me: You’re stumped.
Dr. BadHair: Yes. She’s certainly an unusual case.
And I waited for her to continue, but instead she started packing up Chickie’s file as if she was about to leave.
Me: I’m sorry, I appreciate your honestly if you’re truly stumped, but WHAT ARE WE SUPPOSED TO DO, now? She can’t go out in the sun without getting a rash. She can’t swim, and we have a pool. Basically she lives from course of Prednisone to course of Prednisone, and I don’t know if you’ve ever had a teenager on steroids but it’s not exactly fun for us to constantly have to be choosing between itchy, rashy, miserable kid and steroid kid. She’s supposed to go to a special camp this summer! For three weeks! How can we send her away when we have no idea what’s wrong, still, and no treatment plan?
Dr. BadHair: I understand you’re frustrated.
Me: That’s right, I am. I get it, okay? I get that some of this is art rather than science. That’s fine. Tell us what to try next.
Dr. BadHair: I don’t know.
And it was right about here that I started to fantasize about punching her, or stomping on one of her sensible shoes as hard as I could.
Me: You keep saying that. Fine, if you don’t know, who does?
Dr. BadHair: I don’t know. I guess come back next month for your regular appointment with Dr. DepartmentHead.
Me: And this month we should…?
Dr. BadHair: I don’t know.
Me: Do you understand that this is FOUR YEARS we’ve been without an answer? Four years that this child has been in agony, on and off steroids, and unable to live like a normal kid?
Dr. BadHair: That’s a long time.
Her voice was still mild, slightly bored. No inflection. No emotion. My fantasies shifted to closing my hands around her neck and squeezing until something mattered to her. But because I’m not actually a sociopath I decided to try a different tack.
Me: Okay, let’s talk about camp. Three weeks, several hours from home. Is there some way we can make that work?
Dr. BadHair: Where’s the camp located?
I told her where it was.
Dr. BadHair: Oh, well that’s not far from several major hospitals.
I blinked at her for a few seconds.
Me: Soooo… because it’s not far from medical care, we should send her off with a chronic, undiagnosed condition, and just… hope that the counselors will take her to the hospital if it gets bad…?
Dr. BadHair: Well I’m just saying she wouldn’t be stuck in the woods or anything, if she needed care.
Me: Well I am just saying that SHE IS GOING TO NEED CARE if we have no diagnosis and no treatment plan. And I doubt the program would be pleased to have this dumped on them. And we can’t exactly just run on over there, given how far away it is, if there’s a problem.
Dr. BadHair: You could just put her on Prednisone.
Me: For THREE WEEKS?
Dr. BadHair: Why not?
Me: Um, because she’s a growing child and prolonged steroid use isn’t without side effects?
Dr. BadHair: Well, that’s true.
Again I blinked at her. Still, she sat there looking bored.
Dr. BadHair: You know, there’s special dermatological camps. For kids like her. Maybe she could do that, instead.
If only I’d had a camera in my hand, I could’ve taken the greatest picture of Chickadee EVER, as comprehension dawned on her face about what was being suggested. As it was, I very nearly choked on my own tongue before I was able to speak.
Me: So, instead of attending an elite math camp for gifted students, your solution is that she go canoeing somewhere with other kids with skin problems.
Dr. BadHair: I’m just saying it’s an option.
Me: I am just saying that my child has been miserable and undiagnosed for four years. I am just saying that instead of telling us what the logical next step is, you’re telling me that you don’t know, you have no suggestions other than that she should just stop pursuing a normal life. I am just saying that as a parent THAT IS NOT AN ACCEPTABLE ANSWER TO ME.
Chickadee grabbed my hand and squeezed it as my voice cracked. She was alarmed by my emotion, and I took a deep breath, squeezed back, and tried to steady myself.
Dr. BadHair: I’m sure you’ve seen House. These things take time. [And as she said this—in the same bored and disinterested tone—she actually shrugged.]
Me: Uh, sure, but on House they TRY THINGS. Let me ask you this: If this was YOUR child, and you’d been four years without relief or a diagnosis, what would you be doing now?
Dr. BadHair: I don’t know.
At this point, Dr. BadHair was called out of the room by a nurse, and I went back to the waiting room to fetch Otto. I believe my exact words to him were, “OHMYFUCKINGGOD I AM GOING TO HURT THIS WOMAN PLEASE COME NOW.”
When Dr. BadHair returned, she reiterated that we should come back in a month. Otto then asked her the same questions I’d just asked, drawing an “I don’t know” in response to every single one. When Otto asked about an Immunology referral she said, “I guess you could do that if you wanted.”
After some strongly-worded pressure from Otto, Dr. BadHair agreed to have some blood drawn to “look at a few things.” She urged us to make an appointment to see the specialist in Birmingham, commenting in the same bland, bored tone that he probably wouldn’t be able to see us for six months, anyway.
All told, we spent six hours on yesterday’s excursion. The only tangible result was Chickadee muttering last night, “I’m just never going to be any better, and I guess I’m never going to camp, either.” I wanted to tell her she was wrong, but all I could say was that we’ll keep trying.
If I’d made this up you’d all tell me it was too ridiculous to be believed, and you would be right.
On the bright side: We did not kill Dr. BadHair. Or hurt her in any way. I am just making fun of her hair on the Internet, like a polite grown up. Because right now that’s all I can do.
I think that MY blood pressure just went up reading that! Oh mah gah.
Whoo boy, Mir. I would’ve totally cried. Because I cry when I get pissed off. Like an adult, you know.
Have you tried skin peels and goat’s urine? How about crushed baby bird bones tossed over a dry creek under the new moon?
It may not be conventional medicine, but it’s better than you got from tri-nothing doctor.
I agree with Holly, I would have cried too, I would have been soo pissed! Ok, that Dr. is an idiot!!
I so hope the blood work shows SOMETHING and that it is an easy fix. Both of you deserve for this to be solved.
And that is one of my favorite words: OHMYFUCKINGGOD I use it often lol
Poor, poor Chickie. What is really frightening through all of this is that you are at a teaching hospital, and it’s very possible that this woman is “teaching” her students this same attitude – obviously she’s decided it’s just not her problem to take care of. I would be sending some very strongly worded letters (or even just a copy of this blog post, perhaps without the “bad hair” comments) to higher ups all over that hospital.
We have had an ongoing rash problem with my oldest, and something in her college dorm room sparked months of the worst eczema I have ever seen in my life (and apparently the dermatologist felt the same way). We got that one under control with steroids and allergy meds, but it is still a problem – mostly on her face, neck and arms – all of the places exposed every day on a pretty college girl. Her dermatologist moved away, and we have pretty much given up on finding a new one – until the day she breaks out like that again.
Deep breath. I hate crying in front of doctors, and yet, I do IT ALL THE TIME! Huge hugs. And FWIW, we see specialists in Birmingham and my personal opinion is this: the person who diagnoses my undiagnosable child is not likely to be at a teaching hospital in Alabama. Not to say there aren’t some great doctors in Birmingham, because we have some of the best. But. If the specialist is that special, they would have been snapped up by Big Atlanta Medical Center or Mayo. Just sayin’. If you do go to Birmingham, eat at NEWK’s on 21st Ave. ;)
Oh. My. How did you not kill her? I think I might have. I’m beyond impressed at your self control. And, unimpressed with Dr. BadHair. Can’t believe she referred to a TV show.
Doesn’t this suck?!?! I’m the mom — you’re the doctor. You tell ME what to do. I got the parenting thing down; how ’bout you use a little of that education on diagnosing and treating my kid, and if you can’t, send me to someone who can.
You’ve got the patience of a saint; I don’t!
I would have just strangled her.
Okay, one thing that that doc needs to learn is that “I don’t know” isn’t an answer. How about “I’ll do my best to find out.”
I agree with CCR. My blood pressure is up. I’ve had a day sort of like that today, so reading about your yesterday just made my bp shoot up. I hope your Friday is better than Thursday.
@Holly…I cry when pissed too. like an adult. :)
Well, at least you know which doctor to never ever see again. Sorry about the bad doctor’s visit. I think my blood pressure would have shot through the roof as well.
Can you file a complaint? My sympathies for what you are going through.
wow. huge kudos to you for not kicking her square in the nuts. i think at this point i’d be thinking about mayo. good luck.
You know, if all they were going to do was be massively unhelpful, you’d think that they’d develop a phone consult protocol for that. “Well, we want to bill your insurance for a visit, but since I’m just going to tell you ‘I don’t know’, why dont we code it as a USELESS_UNHELPFUL, and call it a day?” Just as frustrating, but with less driving required.
Eesh. As someone who’s dealt with mystery illnesses, I know how frustrating it is to live in the land of medicine as art, and while you’ve had a LOT of practice in accepting it over the past few years, it never gets easier to hear that there’s no clear path. However, no clear path doesn’t mean NO path – physicians who fail to understand that distinction are really a drain on the profession, and mockery is sometimes our only refuge.
Wow. I am so sorry about that. Have you looked into other hospitals/medical institutions to bring her where maybe people – uh – know things (“I don’t know” much?)? It seems like you may have exhausted the potential of this particular department. This is so horrible for all of you.
I hope that Birmingham can figure it out, and Chickadee can move on. I especially hope she can go to the special camp for MATH and not the special camp for RASHES.
Geez.
Oh my gosh, I want to strangle her and I’m just reading about it…I’m so sorry you wasted the whole day on that excursion. It did make me laugh to think of Chickadee going to skin rash camp, though…you know they have some mad fun with exfoliation there…
OHMYGOD. I mean, OHMYGOOOOOOOOOODDDDDDD!!!!! I can’t believe you didn’t strangle her. Did she get her MD from a Cracker Jack box? Her bedside manner from a sponge? I agree with Caty, time to start checking out the big guns centers. Mayo or National Jewish here in Denver (specialists in various allergies). This is infreakingsane and Dr. BadHair needs to be smacked upside the head. Wow.
I really truly hope you and Chickadee find some answers and relief soon.
And after you do, you should pitch your story to the “Medical Mysteries” feature they run in the Health and Science section of the Washington Post. This sounds just like those, except they are all solved in the end (often after years of misdiagnoses).
Any possibility of bringing in a health advocate? My sister is a nurse practitioner, and if you were in Nashville, I’d send you to her. I’m a lawyer, for crying out sakes, but I have gotten so completely overwhelmed numerous times (including my own battle with the never ending hives a few years ago) with non-responsive doctors that I’ve just started making her go with me to appointments I’m concerned about. She knows how to cut to the chase in their language and I’m always amazed at the difference.
I’m so sorry for Chickadee. I’ve had my share of chronic, undiagnosable illnesses in life and it is so frustrating. Especially when you’re a teenager on steroids. Because then you know everything and everyone else is so stupid plus you’re hungry and mad. Life is hard.
Did you mention to her that House is FICTION and this was a real, actual kid in her office? I don’t know how you didn’t scream! I hope you get an answer very soon!
I think you just raised the internet’s blood pressure a full three notches. On the plus side, should you feel that a full-on, torches blazing, pitchforks waving bit of “diplomacy” is in order, I think you’ve got some irate Internet villagers you can call on!
OMG is right. Take pictures of the rash & send it to every derm on the planet – heck, post it here – someone, somewhere MUST know some thing to help this kid, ya know? I feel so bad for all of you. BTW – you handled yourself like a champ – i’d be in prison right now.
As an adult with chronic illness, who was once a teenager with (a bunch of) difficult to diagnose chronic health problems, I definitely believe your story, and would like to give you & Chickadee a great big hug. I’m sorry you are dealing with doctors like this – even if you don’t know, at least have some compassion or understanding or freaking suggestions about someone who might! I hope that you find some answers soon.
Oh HELL to the no! Write out a very detailed (include dates if you can) list of the appointments you’ve had over the past four years and follow up with a neutral (the comedy is great but you’ll need to lose that, LOL) assessment of your appointment yesterday.
Pursue other options with the alternate referral and call the general hospital number of the facility you went to yesterday. You need to keep pursuing the other branch because it’s too easy for Dr. BadHair to say she told you what to do and you chose not to.
When you call Dr. Badhair’s hospital, ask for the Patient Advocacy department and to be assigned a representative. Fax them (email isn’t usually condoned) the list and just wait. I will tell you that if you treat most PA’s with the utmost respect, you get that back tenfold. Those who go into the office screaming and cussing – they’re written off as bad seeds and easily excused to the hospital board if a report is ever filed. Quiet and calm is deadly in hospital administrative land. Let me know if you need any help; we’ve been the route and this was the only way the situation was resolved – I’m convinced we’d have been 10 years in if not for an advocate.
Wow. I would be furious, and I would definitely complain to her higher ups and insist that you never see her again if you continue to use that facility.
Poor Chickadee.
OMG. Why oh why did they ask you to drop everything and come in yesterday?!?! They should pay your copay AND gas. I am non-violent but I too may have hurt that woman.
I think Mandee might be on to something with the health advocate. This is beyond ridiculous. Poor Chickadee.
I think you deserve a medal for not telling her what a complete idiot she is, and that her medical degree should be rescinded immediately! I wonder if the fabulous medical entity in the big city would like to know just how inept this woman is?
Here’s hoping the remainder of spring break is very much happier!
BTW, that’s the first time, ever, I have heard of a medical professional say, “you know that television show? The dramatic one? The one that is not reality but intended to amuse and entertain? Well, it’s JUST LIKE THAT.” Next you know she’s going to recommend a visit to Dr Google.
Professional? Shmofessional.
I have never met a doctor who doesn’t disdain TV medical dramas and characterizations of the physicians and situations portrayed. For the record, I work at a university-affiliated hospital. What a maroon!
I really hope you find some answers soon and that you never have an encounter like that again.
What makes me sad is that I totally believe it. Sigh. Prayers.
i hate hate hate it when i can’t get answers for my kids. and in this case you can’t even get a hypothesis. insanely frustrating. and dr handled that about as poorly as possible.
I understand your pain. I spent three months trying to find out about a horrible allergy I had this past fall where I have now left scars on my arms from scratching. We were finally able to find a cocktail and then when winter hit, it went away, but I am terrified about next fall. The only thing that came up on tests was a slight dust mite allergy, but the doctor said that it shouldn’t have caused the systemic reaction it did.
We made all the dust mite changes and it did help quite a bit, but I don’t know if it did because by the time we had an answer it was winter or not.
I am sorry she has to go through this.
I’m totally with Megan. She mentioned “House”?!?!?!?
Heck, maybe at this rate you should send Chickadee’s medical history to the “House” writers. They’d probably have a better shot at figuring it out than Dr. BadHair.
A. She referenced House? What kind of quack doctor is she?
B. She actually said “I don’t know”??? That’s an unacceptable answer. Go fucking ask somebody else to come in and look at the child.
C. She really wanted her to go to skin problem camp instead of her special camp?
I’m furious for you. FU.RI.OUS. Here’s to hoping the next quack doctor can do something for her.
Unacceptable behavior. Report that woman immediately, to her department, her hospital, her university and to her medical board.
As for Chickadee, all I can do is send good healing thoughts her way and hope you are able to find someone to HELP you, rather than just waste your time and take your money.
Hugs!
I think you should e-mail this post to Doctor Departmenthead as well as the CEO of the Hospital. They need to know that Dr. BadHair should not be permitted to see patients without public relations supervision.
Her next comment may have been “I’m not a real Doctor, but I play one on TV.”
Incidently, you were very good, and showed remarkable restraint. You are pretty.
Has anyone ruled out Henoch-Schonlein Purpura? You can read about it here: http://www.medicinenet.com/henoch-schonlein_purpura/article.htm Both my kids have had it to varying degrees. With my daughter, it took a long time to get a diagnosis.
I am INCENSED at this, on your behalf and especially on Chickadee’s. That is absolutely reprehensible.
I had a long-undiagnosed skin condition at Chickie’s age, so I sympathize so much. Mine turned out, after a long time of not knowing, to be a lanolin allergy. I really hope hers will be something similarly simple that has been overlooked thus far.
OMG!!! that is unbelievable. How much did that visit cost you? I would disputing any charges–you should NOT have to pay for “I dont know” fee.
OMG what a terrible situation. At least, the doctor admits that she does not know what it is. Have you tried to get information from patients’ internet forums? With rare diseases/allergies the people often know more than their local physicians. Me for example, I have a rare endocrine disease with untypical symptoms, and I found out myself what to do and which doctor to try. Sometimes you have to become your own specialist.
As for the symptoms, maybe you should try the following recipe against itching which a pediatrician in our hometown advised when our baby boy had severe chicken pocks all over his little body and was terribly scratchinng himself :
Let you daughter take a lukewarm bath before bedtime in water with some added vinegar. Don’t worry, it will not burn on the skin but just calm the itching (because vinegar it is basic not sour), even if you have little wounds. Afterwords put on “Lotio alba” (which is a zinc lotion based on water, I think, over here in Germany you get it in pharmacies). This has a cooling and healing effect and no side effects. You only look white all over. It can easily be washed off only with water the next day.
I wish you good luck to find the right physician and an exact diagnosis very soon!
Unfreakingbelievable.
Or you could just hold down Dr. Badhair and shave her head. That would help.
I think I totally would have punched her.
A thought about camp that may be totally ridiculous but I’ll say it anyway: What if she goes? The worst thing that can happen is that she breaks out in the rash and she goes to a new hospital with new dr.s, that maybe, just maybe, one of them has seen this before and knows what to do?
I don’t know, but I’m not the one with a medical degree, either.
Your. Dad. Is. Awesome.
Ok, I am beyond impressed that you didn’t attack this woman physically. OR SCREECH AT THE TOP OF YOUR LUNGS right in her face! I, personally, would have snotted all over her white jacket and sensible shoes because I cry when I’m angry and then THAT makes me angrier and I cry even harder. (I’m with you, Holly, like an adult!)
The main thing, though, that keeps playing over and over in my head, is how can we help this woman and her sweet Chickie? Shit. There has to be something.
first of all, have you considered the doctor has brain damage from all the chemicals in here hair dye? no, ok. than feel free to throttle her. :-)
what about some kind of allergy to her own sweat? sun and fever both make you sweat even when your skin isn’t exposed. keep in mind all of my medical knowledge is gleaned from house and chicago hope.
I am also an angry crier, which annoys me to no end (and it also makes me angry when I angry-cry, which results in more crying).
I work in a teaching & research hospital, although I’m not personally a health care expert – and that is freaking ridiculous.
I agree with all recommendations to get a patient advocate & write a letter to the hospital (I would also not pay for the I don’t know visit).
Oh MY. ARG. ARG. ARG.
How you managed to not strangle, punch, kick, bite, or otherwise inflict some sort of bodily damage on that “doctor” is beyond me. And I congratulate you on what must have been restraint of epic proportions.
I wish I knew of a person that could solve your mystery.
Good lord, that’s horrible!!
Okay, I’m going to suggest something that probably makes no sense whatsoever. Have you thought that maybe the rash could be caused by something psychosomatic? I mean, the rash itself probably has an explainable biological mechanism as to how it happens, but the why? Maybe it could be caused by stress? During the summer, Chickie travels from you to her dad, it might be the change of scenery and the stress of making everything work? And the flu, well, it’s kinda stressful being sick. Then this last episode, again a change of scenery, which makes me thing that camp this summer might also see an outbreak. So if stress or some sort of psychological issue is causing it, maybe there’s a way to solve it through some kind of therapy that would result in no more cause for rash.
I realize this is all out of my ass and probably completely without any foundation, but I know you don’t have many options right now, so I wrote it anyway. I apologize if it’s totally stupid.
Oh for the love of everything that is holy!!!!! What the heck? I hope I never have to see a Physician in GA. I have been following your blog for quite some time and it just seems crazy to me that you apparently have two children that the medical community in GA simply cannot treat. Really? This cannot be. I feel so sorry for your family. This is a special kind of crazy!!!!
I did not read all the comments and I do not know if this was suggested before but have you considered options outside of your area? I do not have any personal experience but I have heard that many people go to Mayo Clinic when they are having medical issues that are going mis-diagnosed. Yes, I know that you are not near a Mayo Clinic. I’m in WI so the closest for me is MN but I think there is one in FL. I don’t know if that is THE answer, but it is just a suggestion. It seems pretty drastic to have to try to find an answer so far from home but if you get an answer, prehaps it would be worth it. What about a physician in the community the Chickadee’s father lives?
I hope she feels better soon, somehow.
And for this you had to drop everything and drive 90 minutes??!! I sympathize. My life, like yours, may have to be shelved as fiction someday because I will write it to preserve these unbelievable adventures!!
1. I’m surprised none of them have suggested psychosomatic. Or however it is spelled. Not that I want them to, just seems like it’s all in her head would be a great copout. They could wash their hands of you both and you could spend ALL your time scouring the southeast for differently flavored therapists for each kid whom your insurance will pay.
2. Mayo in Jacksonville is not that far. Perhaps you should dump Big Medical Center in Atlanta. If I still lived in Jax you could stay with me. Honest. I still have friends and relations there if it comes to that
3. For that matter: is this gifted girls camp in Durham, NC by any chance? Because maybe you could at least see a doctor at Duke, or UNC. So long as she’s in the neighborhood. I don’t live there any more either.
You are a much MUCH better woman than I. Hugs all around!
What Shannon said. I’d suggest you come to my not too far from you Academic Medical Center but since my friend just took her child here and had the pediatric gastroenterologist talking over her extremely bright 10 year old’s head about cancer and other remote possibilities in a ‘child must also be deaf’ style — maybe not.
well sh!t, at least upload a picture of her heinous hair! I am frantically googling hospitals in Atlanta once I hit “submit”.
How did you stay as calm as you did? Seriously? How do you stay professional when the person you are dealing with is as unprofessional as she can get? That is unacceptable!
FOUR YEARS! That’s almost a third of Chickadee’s life!
COMPLETELY agree with Shannon with a cc: to your regular ped, the head of the dept, the head of immunology, and your insurance company. I would notify the insurance company that they should fight the hospital regarding the claim since no medicine was actually practiced that day.
We had a terrible (TERRIBLE) encounter with a pediatric neurologist, and I just ate it at the time. Months later I ran into the big neuro guy that runs the practice at a conference and I worked up the nerve to tell him all about it. They followed up after that, and (I heard from our pediatrician’s office) launched an investigation into her patient care based on our convo… guess we weren’t her only victims! If this woman is doing this to you, she’s done it to others.
Also agree with whoever said to try a different hospital. Didn’t you already take her to the Mayo last year? Maybe Stanford this time? Someone, somewhere, will know how to help your gorgeous girl, and I doubt that person is in the same vicinity as Dr. Dumbass-with-the-hair.
It was visits like this that I’ve now had for several still-undiagnosed issues that has made me realize that I (– and I suppose our culture) expect doctors to have solutions. The fact that they don’t know what is wrong or how to make it better- let alone cure it- is horribly frustrating. I don’t like to be unique. And Dr Google hasn’t done better since if I google “sensitive skin” or “painful skin” I tend to find only porn or handlotion.
Medicine sucks. And so does prednisone.
I have to keep reading it over because it doesn’t seem possible. SHE brought up House? ?????
The mind boggles.
Something tells me you need this more than I do today.
Mir, I am so angry just reading this. I can’t even imagine how upset you must have been in the moment. This is astonishing. Imagine if you were a parent that didn’t have the knowledge or confidence to ask questions of a doctor. This is absolutely appalling.
OMFG is the only thing that comes to my mind too…..
My husband has suffered a similar rash issue for the past two years. Doctor after Doctor has looked at him – allergist, dermatologist, our regular GP.. Autoimmune specialist. It looks like… roseacia sort of but not really.. all over his face and his whole body has a rash but it’s less than on his face. Sun and sweat make it worse, but they are not the cause. We’ve even tried food elimination, dye elimination, blah blah blah. All doctors stumped, never come up with a clear diagnosis…. Prednisone helps clear it up, but as you say, you can’t live on the freak’n stuff. When his rash would start to go away, the inflamation would go down but his skin would be all flakey and dry and just gross.
As a last resort… his dermatologist said.. here, try this.. I don’t know if it will work, but if it does? Great!
You know what? It’s working. three months now… clear skin. When he feels the rash coming on he applies it immediately and it dies down and goes away.. really he’s rash-free with this stuff.
A simple tube of – Promiseb topical cream – . It’s a prescription.
I am beyond furious for you! I’m not surprised there was an opening to see her at Big Atlanta Medical Center. She’s an idiot!
Loved the part when Chickadee grabbed your hand and squeezed it! She knows you are doing everything in your power to figure this out. Hoping for a quick and correct diagnosis.
I am also one of those people that could cry when getting upset and angry. I feel your pain as you try to find answers and help for Chickadee. I have had to fight the doctors for results but, fortunately for me, did not draw out as long.
I wish you success with the blood that was drawn.
Oh My God!!! My blood pressure just keep rising as I read. And my first instinct was to call Big Atlanta Medical Center, ask for the name of the Dr. in derm with the wierd hair, book a flight and come throttle the Hell out of her. Then tell her to go back to waitressing because that’s where the vacuous, bored sh*t is generally accepted. NOT AS A DR TREATING A PATIENT!!! (sorry if I’ve offended waitresses)
I dealing with this same sh*t at the U of M but I’m an adult and Chickie is not. I’m sorry.
Mir,
Mir,
When I was at my wits end with the medical doctors a few times in my life, i resorted to find a naturopath/acupuncturist. He was a naturopathic doctor who studied acupuncture and chinese medicine for 4 years… i FELL IN LOVE with him!! he cured me from 2 herniated discs when the doctors had told me that all he could do was give me strong pain killers and hope it would go away… I saw the naturopath three times and was cured!! (It’s been 8 years!!) I referred a few people i knew for unrelated issues and they were cured as well!!
I feel for you with the horrible experiences you’ve had so far…
i hope you don’t take this as unwanted advice… i just really hope you can get an answer :)
JennP
Graaaargh. If doctors can’t give answers, then they should dispense a heavy dose of Bedside Manner.
Very irate on your behalf, and hoping for answers for Chickadee.
I hate doctors like this. Seriously loathe them. Now, at the risk of sounding like Capt. Obvious Assvice Asshat of the Internet, have you looked into getting her seen by someone at CHOA? We’ve had a lot of experiences there and they were all really good because it is so child-focused. We visit the Scottish Rite campus because it is closer to us and probably you (it takes us 15 minutes to get to SR so it would probably take you around an hour. Don’t worry, I am not some weird stalker, my SIL and BIL live in your area and my brother graduated from the big university there so I am familiar with that drive). I also have a couple of dermatologists I can recommend if you want- they are kind of odd but they are incredibly thorough.
Poor Chickadee, if good thoughts from the readers of your blog could cure her she would have been healed a long time ago. Of course the funky haired doctor would probably be a ball of goo from our bad thoughts so I guess things work out.
WTF??? Okay, seriously, I am SO impressed that you did not light her fugly hair on fire and then kick her a few times while simultaneously throttling her. YOU ROCK! She on the other hand sucks donkeys.
I wish so much that I knew what to suggest. I think I would probably start with Chickadee’s pediatrician and see if you can maybe go over somebody’s head somewhere, whether it’s at your insurance company or at the dermatologist’s office. You’se probably already tried that, but just in case….
I’m so sorry that you’re having to deal with this, and that Chickadee is.
Did you ever consider writing to the new York times? The take on medical mysteries from time to time, then publish the result in their Sunday magazine.
Sixty ago when my mother was in college she went down south (from CT) to play in a golf tournament. They had to send her back home because she had such an allergic reaction to some kind of pine trees.
I hope you find your answer.
OMG, I hope things are going to get better soon. There seems to be a lot of great suggestions from fellow commenters. I would feel so hopelessly sad if I were her. Big hugs to her!
In these types of situations I would have screamed, and unlike others, I don’t cry when I get mad (my SO wish I would!). I just get louder until it becomes a blood curdling scream. *HULKERIZE*
My take is just a little different. I think it’s OK for a doctor to admit they don’t have an answer. In fact, I wish more of them *would* admit when they really don’t know, instead of pretending as though they do. It might save us all a lot of time and angst. And money.
What’s not OK is to have no plan for what comes next.
Do you have a PCP who is interested? Have him or her join SERMO, an online community for MDs. They can post the case and get feedback from thousands of others physicians.
Worth a shot, and I hope Chickadee (and you and Otto) all feel better soon.
A) I don’t think I need to tell you this, but you can refuse “treatment” even if the treatment is nothing. What I mean is, you can refuse to see the specialist in Birmingham.
I take my daughter to an office of ophthalmologists, and there are a few that aren’t so good. I was getting a similar run around WRT treatment. I ended up requesting her records, making a spreadsheet of the treatment, and then also bringing in the husband. We got some results this time, we’ll see how the next appointment goes on Monday.
Anyway- one of these doctors suggested we taper off a med oh, about four times faster than we had previously tried, and on top of that, the longer taper wasn’t working, either. I SAID no, but she didn’t listen. I followed her advice anyway, and I was right. And I hate that I didn’t stand up to the doctor and just say no.
B)My cousin had a kid who was House-episode sick and a doctor husband, and they were still getting this stupid run around from his doctors. Doctor-husband actually listed out the symptoms, sat down with the doctor books and eliminated everything until he came up with the answer. Keep going, Mir.
I actually think taking pictures and sending them everywhere is a pretty darn good idea.
My mom had (she thought) Celiac disease for TWELVE years. During which her blood tests did NOT show Celiac – her symptoms did, but not the tests.
All this time, she was rigorously following a gluten-free diet. Her doctors kept telling her that she must be cheating.
She went to Mayo — finally — and within 2 days they discovered that she had UNDIAGNOSED DIABETES.
Within ONE dose of her new medicine, ALL HER SYMPTOMS DISAPPEARED.
It’s been three years, and she’s a new woman. OH- and she’s not going to DIE of diabetic shock! Yay mom!!
Go. To. Mayo.
I would try Mayo Jacksonville. They can also consult with the derm docs in Rochester and Phoenix. Mayo can figure anything out . . .
Good luck!
Don’t know what to say. I’d say bring her to Houston b/c we have more specialists than you can shake a stick at. But, no one knew what was wrong with my kid either. Thankfully it didn’t take 4 years…
Mir, you have far more patience than I. Having been there done that with a few of my son’s specialists, I’ve got a basic coping skill that works for me. After repeating that Chickadee’s issues were ruled out, and getting the tone and attitude, I’d have told freaky hair doc in a polite and calm tone that she would be getting attending physician. If she was the attending, I’d tell her to get her department head and that you were done with her.
Once you got the person you needed explain what she was trying to foist on you. It was obvious that she wasn’t listening, nor had she obviously read your daughter’s chart. While you didn’t expect answers right that second, the doc should have had the courtesy to read the chart at the very minimum.
Having you drop everything and drive however many zillions of miles when they’re not even going to bother listening to you or look at your kid much less anything else is unacceptable.
Your previous doc had suggested going to immunology, then they should have had someone from that department standing by to take a gander and maybe take a few samples of something. It might not be the answer, but at least it’s something for them to try to see if they can do tests to make it go away.
There had been a couple of docs that I reported to patient affairs for similar treatment of my son. I even went so far as to write them and the hospital director a letters that basically told them that as far as I was concerned, they were fired and they’d not be treating m y son in the manner that they had ever again and I wanted to make sure my insurance and the hospital director new as well.
I realize that its probably not that bad, but it is so not cool when medical professionals treat people like that. It should be a partnership, not a “I really don’t care and I am bored with you and wish you would go away now” thing.
I hope immunology finds something that will help Chickadee. It’s worse than not knowing what the problem is.
I think I know Dr Badhair’s brother, Dr McBitchy. When I was having no-good-way side effects from a long-standing prescription and tried to come off it, only to have much, much worse side effects, his advice (delivered in a flamboyantly bored, irritated fashion with a lot of sighing and eye-rolling) was to start taking said prescription again. And continue to take it for the rest of my life. And just deal with the side effects. And I really needed to listen to people who knew how such things worked. And no, there were no other options. (FYI: there turned out to be so many, in retrospect, it was completely laughable). I have never been angrier and more upset. For months after, every time I saw a commercial with “if symptoms persist, see your doctor”, I’d start to seethe and throw stuff at the TV.
A couple summers ago, my kid developed a painful condition and after having all the usual tests with negative results, she was referred to a doctor at our local childrens hospital whose specialty was to work with kids like my daughter – who have mysterious symptoms with no obvious explanation. He was a real world House, only nicer, younger and cuter. He only saw my daughter once because he was pretty sure about his diagnosis and he was right, because he referred her to another doctor, got some PT and the condition resolved. There are options for your daughter that you probably haven’t looked at because you don’t know about them. If you are interested in learning the doctors names and hospital we worked with, contact me directly. (As an aside, if another doctor discovers fairly easily what’s wrong with your daughter’s skin and it could have been learned of early on, I suggest you see a lawyer for all the unnecessary suffering she’s gone through).
Wow. Yep, I’d be just about ready to kill someone too. Good luck sorting it out. Oh, and congrats to your daughter for being accepted to math camp and I also hope that one of the previous comments helps!!
I’m so sorry you had to deal with an unprofessional, unsympathetic jerk like that!
My Mom deals with a some crazy, horrible rash that is caused/exacerbated by the sun. She has tried many, many doctors and lotions, potions, pills, and so on without getting an answer. I get a lot of hives and rashes also. I’ve tried everything from steroids to over-the-counter. I agree with you — staying on steroids isn’t a first-choice option. I don’t know what they do for your daughter, but I certainly hate the way they make me feel.
I’ve gotten some relief from:
1. CO Bigelow Lotio Mentholus. It smells terrible, but seems to provide temporary relief when the rash itches or bleeds.
2. CO Bigelow 1838 Herbal Balm (it has calendula in it). It’s soothing.
3. Rx from my allergist. They seemed to spend more time and have more options to try to help me than the dermatologists that I’ve tried. I think I lucked out in finding an allergist that actually listened before diagnosing. YMMV
Anyway, I know how frustrating as an adult skin rashes can be. My heart goes out to your child. It has to be worse to be a kid dealing with them.
Oh this is horible! What a frustrating and sad situation. Your poor daughter, and poor you.
Maybe all her hair coloring has given her brain damage and she now thinks she is actually on a tv show and House is real? She just seems confused, and irritating, and indifferent and horrible.
All good medical advice comes from googling your symptoms anyway….right? Ha!
I have to agree with Dara, talk to your pharmacist. It amazes me what they know, but then oh wait, they’ve been to eigth years of school too – and usually have much better bedside manners. Have you ever tried Corium 21? It’s an aloe cream.
I truly admire your restraint – and Chickadee’s. I’d have been shouting, probably something like “do you fucking care???”
I suspect everyone who says to go to a top-notch clinic is right, but if you are stuck with that place I hope you manage to get a decent investigation of the immunology possibilities!
Hi, I commented at #51 and now I’m reading comment #53 and that made me think of something.
My adult male cousin has a rare blood disease, not that Chickadee has that but my point is that is took a really long time to figure out. I think one of the main reasons it was figured out was that he has a Pitbull of a twin brother who was reading and researching for him. Anyway after it was diagnosed guess what? It is so rare that only one doctor in the country treats it and he has to go to Duke in NC twice a year to see that doctor and then that doc works with his doc back in WI.
I tell you this so that you can beleive that solutions show themselves. But, sometimes they are difficult solutions. Now my cousin & his wife just try to make little mini vacations out of the two trips each year to NC.
My heart goes out to you and Chickadee. My girls both had terrible eczema as infants, my oldest the worst, and it was heartbreaking and stressful, with lots of doctors and research, and I had to go “House” on our lives to figure out everything that made her break out. Luckily, they’ve both outgrown the worst of it, and are only prone during winter, now and then. So I am wishing that you guys figure this out soon.
Oh. My. Word. I’m rather surprised you managed not to do serious bodily injury to that CHARMING doctor. (And of course in this instance I use the term “doctor” rather loosely!) You are a very pretty, shiny-haired example of fortitude. I’m so sorry that they’re having such a hard time figuring this out, and I am wishing really hard that it’s resolved soon!
What the hell? I say we have a flash mob, go visit this woman’s office, and demand some sort of plausable answer. My 1 y/o has a heat rash and a sunburn, but no heat rash on the sunburn, so I can empathize.
Poor Mir. Poor Chickadee. Stupid Doctors. Maybe you could write the peeps that write for House and they can work it into the show and find you an actuall reason for said mystery rash. Couldn’t hurt.
I think your Dad is right.
Also, I think that your restraint is remarkable.
I don’t mind a doctor telling me “I don’t know” but it darn sure better be followed with “BUT I will find out!”
The Mayo clinic might be a good idea. Also #81’s doctor!
I wish I had some good advice for you. Just know I’m sending good thoughts your way.
How does C feel about camp? I’d probably send her, but then again!
hey Mir I usually never comment here. But today i just knew i had to. I am 20 now and since i was 9 i had a skin rash on my face. every school holiday i would be shipped off to the BIG hospital and doctor after doctor would treat me. they ran tests and so on. apparently it was sun allergy too. sad thing was I am from Maldives. I feel for you both. At 18 i found a dr who prescribed me somthing which did the trick. NOw the rash is not there at all. i sure hope whatever chickie has is not sun allergy. and sumthin treatable. and dont give up. you both are so brave. btw i turned out alright. good grades and gifted programmes and such. just be strong like you always are and you both will make it through.
Oh my god Mir, you have such strength in holding yourself back from stranggling that fecking thoroughbred eejit!!
Poor Chickadee. Poor Mammy’s nerves.
Um…all I heard was “Birmingham” and then started thinking things like “They’ll only be about 45 mins away! Maybe I can take them to lunch!” Which I realize is massively unhelpful unless you actually need somebody near the medical enter to do some research for you (or take you to lunch! or stalk you!). Here’s hoping it’s only 3.5 summers of mystery rash and do let me know if there’s anything a reader in Alabama can do to help.
Mir, I have never commented on your site, but follow you daily. I agree, you have shown incredible restraint. Although I do not normally live state-side I can write Birmingham has some fantastic hospitals with great doctors. Having just spoken to my sister, she suggests Kirkland Clinic (Dr. Chatham-he handles pediatric skin disorder cases) and a doctor my sister now uses and loves is Dr. Maura Kennedy. Whatever Chicky has appears to be systemic..rheumatoid/immune related. Best Wishes!
Mir- you are my new hero. Your restraint is at superpower levels, Dr. BadHair may have well have answered, “I don’t care” and “why are you wasting my time?” instead of acting bored and just repeating “I don’t know.” Fine, it’s okay to not know, but then make a plan TO FIND OUT. And House? Seriously?
When I was pregnant with my daughter I went for a routine checkup with a random OB at a very large clinic. At the end of the appointment he said, “Thank you for not wasting my time with a bunch of stupid questions.” I responded by spending the next 5 or so minutes asking him every question I could possibly think of. I hate stupid, pompous doctors who forget that WE are hiring them to do a job.
If you decide to come to Denver to see the docs at National Jewish, we have a guest suite in our basement that is all yours. There has got to be a doctor SOMEWHERE who can figure this out. Chickie should not have to suffer continuously, poor kid.
Oh, and I agree with PP that you should file a complaint against Dr. BadHair and ask to be refunded the co-pay. She was entirely unprofessional. And who knew there were so many of us who are angry criers?
I just can’t wrap my head around why they had you drop everything for an appointment. I also cry when I’m pissed. It’s not convenient. :)
I don’t have anything helpful to say. I’m sending prayers, good thoughts, etc. in your direction.
OMG How infuriating! I thought your Dad (once again) summed it all up nicely. I hope Chickadee gets an answer soon. If only Dr. House was REAL …
My experience with dermatologists is very much what like you have described. UGH. I agree with some of the other commenters who suggest that you see an allergist/immunologist. S/he will look for systemic causes rather than just seeing the outside.
A long time ago I had an ectopic pregnancy … I came across a group of women doctors who wanted to do everything within their power to take care of me without doing surgery to remove one of my already-pretty-old ovaries. They cared about me as a woman and as a person. And ya know what? They found something to help me. They spent their own precious free time on the internet and in conference with other doctors around the country to find me some help. They were and remain women of integrity and POWER and I love them to the ends of the earth.
Mir …I wish for you and Chickadee to find doctors like mine. I know they are out there for you and I’m praying that your paths cross SOON! Hang in there. You are Chickadee’s very best advocate and you’re doing an AMAZING job! Keep up the great work! You’re teaching Chickadee how to also be a great mother some day!
xoxo,
kathy
You not killing or hurting her is the bright side? I strongly disagree. Push for immunology the way only a mother can. Push hard.
And this is much like the experience of most people w/Fibromyalgia. I’m saying that because I want you to know, I feel your pain. I really do. Keep pushing, keep trying new doctors. Don’t accept. “I Don’t Know” as an answer. I like you trying to put them in your place; “it’s your child, what would you do?” You ARE going to find a doctor who will say, “what would I do if it were my kid?” And when you do, that doctor will search for you, and be an advocate. Until then, consult Dr. Google, if you have the stomach for it.
In the meantime, we’re praying for you all. It’s frustrating & it’s not fair. Tell Chickee, until they figure it out, ice cream helps. ;-)
Hey, just stumbled upon your blog. I live in the Atlanta area. If you ever EVER need ANYTHING while you are in the city please hit me up. (I teach inner city, so you know, we may be able to take care of Dr. Badhair…..or at least her tires. I just need to let my kids know. At least we can fantasize about it.) I did the whole undiagnosed medical condition as a teenager. So dinner for the fam, a giant margarita, a reccomendation for the best icecream or thai food in Atlanta. Say the word. Seriously. I mean this.
OK, I have been following this story for a while, and I’m pretty sure I’ve wondered this before but can never remember the answer: has she seen a pediatric allergist? My daughter has “moderate” eczema (translation: she gets twice-daily applications of prescription ointment, thrice-daily applications of nonmedicated lotion, oral allergy medication in the morning and Benadryl in the evening…just to keep it manageable. I feel really sorry for kids with severe eczema!).
Anyway, her allergist has told me that eczema is exacerbated by extreme temperatures (for some kids, cold…for others, heat) and commonly occurs in skin folds (such as back of knees, wrists, elbows, and neck). She’s also told me that viruses can cause other immunological issues (in my daughter’s case, asthma, but perhaps others as well) to crop up. My daughter’s allergist has also warned me that oral steroids will clear the eczema for a while but that they can cause a “rebound effect” that makes the eczema worse afterwards. Please understand that I am not trying to diagnose your Chickie…it’s just that her symptoms sound so similar to my daughter’s symptoms.
I would expect a dermatologist to know everything I’ve written here, though, so please forgive me if I am repeating information you’ve already been given. All that to say this: TRUST YOUR GUT, MAMA BEAR! If the derm group won’t give you a referral to an immunologist, maybe your regular pediatrician will.
And honestly, as much of a pain as it would be to travel to Birmingham…at this point, it might be worth it. And go to the McWane Center while you’re there…might as well make a day of it :). (And if you need a recommendation, let me know. I can ask my sister and brother-in-law, who are both physical therapists there.)
We are halfway through Week 2 of Bee’s never-ending hives and I’m very, very afraid.
You get high marks for handling that so well (especially for resisting justifiable homicide), and for pressing Dr. Stupidhead for so long. Short of pitching a fit and asking to see her boss RIGHT THEN, I don’t know what else you could do!
Forgive me if this was suggested already. Has she been tested for Celiac? Stress can trigger it, such as a move like yours to Georgia. My grandfather died when I was a senior in high school, three weeks later my sister (age 22) died in a car accident. Then a couple of months later we moved to a new house (two weeks before I went off to college). Next thing I know I have four years of agony. I didn’t have a rash but that is a common side effect. The symptoms are so varied from person to person. It can go undiagnosed for years and years because doctor’s just don’t know to test for it. It’s not a fun thing to have but it’s certainly better to know what it is and be able to do something about it! Good luck!!
A friend of mine recently had the strangest gastro symptoms and went to Dr after Dr after Dr…several admissions to hospitals (in and out of state) and even one surgery…still no relief. She ended up seeing someone who basically said-“eureka, I’ve seen this before!” Simple course of a monster dose of antibiotics and she is cured. I tell you this not to say Chickadee needs antibiotics but rather, see as many MDs as you can getting as many eyes on it as you can. Someone will know this and know how to treat it. Your pediatrician will have to live with the referral requests.
May Chickadee soon get her “eureka!” moment!
Have to agree with your dad’s post … I’d send this or show this to the Department. Big hugs for Chickadee & you & Otto… there isn’t really much more to say, just that I hope there are the answers you need and I hope they are sooner than later.
I have no helpful advice or suggestions. Only lots of sympathy for you and for Chickie.
Mir, a friend of mine had a daughter with terrible skin problems. The eventually went to the national jewish hospital in colorado http://www.nationaljewish.org/ They said it changed their lives.
I don’t think it fits the symptoms that your daughter is experiencing exactly, but I suffer from polymorphous light eruption and it took years to be diagnosed: http://www.mayoclinic.com/health/polymorphous-light-eruption/DS00911. I hope your dermatologists have already considered and rejected it, but just in case… It is terrible to watch your child suffer and I hope you find the answer soon.
I watched a documentary on Netflix last week called Food Matters (I highly recommend it). There were a lot of doctors and specialist, and one in particular, Dr Saul, recommended different vitamins for different symptoms. I suffer from allergies and asthma and he recommends C in large doses. http://www.doctoryourself.com/
As a mom with twins that seem to come up with a new skin problem every year, I can definitely sympathize with you. I have not always been as calm as you though – after being sent in circles so many times, I sometimes lose my cool. But, then I didn’t have the internet to “lose it on” at the time either… It’s good that we can sometimes just let off steam without hurting anyone and still get a few laughs out of it – though its not really funny.
We live in South Ga and my daughters have come up with some mysterious rashes since we moved here also. It is NOT sun allergies, but it is definitely the good ol’ Georgia heat!
Mir. I have NO IDEA what’s wrong with Chickadee, but my son had horrible, horrible rashes and eczema as an infant. Rashes in the folds of his sweet little baby-fat legs. Rashes on his arms, his legs, his trunk, his neck. Horrible bright rashes where his face touched his pacifier. I was given special medicines, special creams that could cause eye damage if he rubbed it and then rubbed his eyes, questions about how often I bathed him (as if I left him filthy and that gave him rashes).
Then I noticed some other symptoms, got some advice from some herbal/natural types, and took him off milk. Boom. Rashes went away, most of them within a few weeks, but all of them within a month or two. He’s got lovely skin now.
I think an immunologist or allergist might be a good idea… or possibly considering a naturopath? Finding a solid one is a bit of a journey, but sometimes a different perspective about how the body works can make a big difference.
I’ll be praying for Chickadee to get to go to HER camp this summer. NOT Rash Camp. (Humph.)
I totally agree with your Dad, and then kill her. You are an angel of a mother. And I would totally fly wherever you want me for the flash mob. And I live in Mpls, 5 minutes from the airport and 90 minutes from the Mayo, if you come here.