I appreciate all of the commiseration on yesterday’s post. Misery truly does love company, and slogging through the tween/teen trenches is made a bit easier by knowing that many of you are dealing with similar issues. (Though I must say that my dad’s comment on my behavior at that age was a nice touch. Ahem.)
Thusly bolstered, I was ready to get back to Doing For Her Highness; specifically, I was ready to play another round of Medical Telephone on her behalf.
When we last left off in the rash saga, the New Specialist was leaning heavily towards a nickel allergy, even though Chickadee has already tested negative. New Specialist insisted we could order a nickel test kit for at-home use, for only $15, and we would soon have our answer. “Just put the patch on her and wait three days and tell us what happens!” She even gave us the phone number and item number of said kit. That sounded odd to me, but whatever. We told her we’d order the kit.
I called the number. I ordered the kit. I waited.
The kit arrived. “Put a few drops of substance A on a swab, followed by a few drops of substance B. Swab surface of item to be tested. Swab will turn bright pink in the presence of nickel.”
Uhhhhhhhh. Hey, that doesn’t seem like an allergy test.
I called the company, and politely informed them that they’d sent me the wrong item. No, that was the item I’d ordered. Okay, well, there must be some mistake, then, I explained. Because what we need is the nickel skin patch test, to determine allergy, which this obviously isn’t. At all. Could I order the correct kit?
No, I could not. Do they not sell it? No, they do. It costs $500 and they only sell to licensed physicians because it’s considered a controlled substance.
I called New Specialist’s office and left a message. Her resident called me back the next day and assured me I’d ordered the right thing. I pointed out that this kit was not for determining allergy. “Oh, there are special instructions on how to use it!” she told me. I pointed out that this kit says in large letters AVOID CONTACT WITH HUMAN SKIN. She faltered a bit, then told me she’d check with New Specialist and call me back.
She called back and insisted this was indeed the right kit. She was going to have New Specialist’s nurse call to tell me how to use it. Uhhh. Okay.
I called New Specialist’s nurse the next day. She said “Oh yes, that’s the right kit! Just put a couple of drops of substance A and then a couple of drops of substance B on a swab, then rub the object, and it’ll turn bright pink if it has nickel in it!” I pointed out that we don’t know that Chickadee is allergic to nickel, and the whole point was to test HER for nickel, not random household objects. “Oh,” she said, defeated. “You should order the skin patch test, then.” I explained about the not-selling-to-non-doctors and the $500. She said she’d call me back.
The next day she called back and told me she could have New Specialist order the patch and we could just “swing by” to have it put on Chickadee. I pointed out that going to Emory is an all-day excursion for us and “just swinging by” wasn’t really an option. Besides which, we were now just a few days out from Chickadee leaving town. She said she’d call me back.
She never did.
I called her today and reminded her that we still need to figure out the patch test. She offered to do it at Chickadee’s next appointment (in two weeks). In a rare moment of UTTER BRILLIANCE I said, “Hey, if I get her pediatrician to call you and coordinate, could we get the patch here in town and have it applied three days before her appointment with you, so that we don’t have to leave town to get it and then New Specialist can read it herself when we come in?” The nurse thought this was a fine idea.
I called the pediatrician, who said it was fine with her, provided that the insurance wouldn’t have a problem with it.
I called the insurance, who kept me on hold for thirty minutes. And then listened to my convoluted tale of mayhem and possible allergies and said, “That test is 100% covered so go ahead.” (That may have been the first and only time I felt genuine affection towards my HMO.) I told the nice woman on the phone to have a WONDERFUL day.
I called the pediatrician, and told them to go ahead and order the patch.
I did all of this, even though—remember!—Chickadee has had this test before and it was negative. I think this one will be negative, too. I think this is a lot of time and aggravation and annoyance for no reason. Except maybe so that we can go back to Emory and say, “Okay. This isn’t it, either. What’s the plan, here, people? You’ve had the summer to work on this and we’re no closer to an answer. WHAT NOW?”
In the meantime, Chickadee is covered in rash, head to toe. She has a new ointment to use while she’s not allowed to take the Prednisone (the Prednisone would mess up the patch test, so no Prednisone until that’s done), and we have no idea whether or not it works. Why? Because Chickadee refuses to use it. You know, because it’s goopy. And it “doesn’t help” (this assessment based upon using it once and not immediately being 100% better). On the day I dropped her at the airport with her dad, it was 98 degrees outside and she was wearing jeans and a jacket. Because somehow that is preferable to using the damn ointment and possibly clearing up the rash.
In the meantime, does anyone need to test any common household objects for nickel content. I’m not positive, but I THINK you put a couple drops of substance A and then substance B on a swab, touch the object, and it turns bright pink if there’s nickel. Possibly. I may need to make a few more phone calls, just to be sure.
Well except for the whole AVOID CONTACT WITH HUMAN SKIN thing it seemed for a bit that at the very least you could have sprinkled and swabbed Chickie for a while just for the sheer delight of shouting “My daughter is a nickel!” a lot.
I am so with you-sort of. I spent hours waiting for orders last week (on my day off), was told they were faxed to the children’s hospital. I call the children’s hospital and learn that one test was ordered and one wasn’t. Call BACK to the pediatrician. And, repeat. I did finally schedule one test though for sleep deprivation. For a 5 year old drama queen. Oh my holy Hell. This should be so much fun. And now, I get to call the insurance company to make sure they cover the test. I’m about to go all lawyer on someone. Head-slam-brick wall. Oh, yes, and we still don’t know what’s wrong with your kid. But, gee, it sure is weird isn’t it. GRRRRRRRRRR
Not to add to your troubles, but I think reading this gave me a rash…
Reading this DEFINITELY gave me a rash. What a pain in the rear, can’t believe you’re still on this diagnosis treadmill!…
I suppose, if by chance this turns out to be a nickel allergy, you now have the tools to test whatever might have nickel in it. Just looking for the bright side, Mir! Hopefully she’ll give that ointment a try before the next appt or you may have to wait even longer…
Oh dear, what a mess. I hope you can find the solution soon.
I’m here banging my head against a brick wall for you. Why oh why can’t people just be competent at doing their jobs?!! Is that too much to ask?? (apparently)
This frustrates me so much for you. I was just saying to my mom (who was having an issue with her insurance company paying for very expensive but you know, sort of LIFE SAVING medication for her because the doctor forgot to cross a “t” or dot an “i” or something.) there really should be an occupation where someone else does all of this running around and holding the doctor’s hands, getting them to focus then when they wander off, getting them to refocus on the matter at hand until it is figured out. Someone to call the insurance company and remind them to play nice with the doctors, clear up any and all misunderstandings. Like a preschool teacher but for the medical community.
I would offer you a piece of my chocolate raspberry cake that has almost made me forget that I’ve had 8 hours of sleep over two nights, but I don’t think that would be a good idea for you. Perhaps you could use it to throw at your specialist’s office instead? I can’t imagine how frustrating that is…so sorry, dear.
@ Em – you are brilliant :”Like a preschool teacher but for the medical community.” what a great idea!
@ Mir- how frustrating!!!!
I agree with Em & was just thinking the same thing. Someone who can get everyone on the same page who doesn’t get brushed off by doctors or case workers at your husband’s insurance company. Not that I would know about that. Ahem.
Agreed about the medical community needing hand holding. That is one heck of a good business idea, someone with money..start that!
Oh. My. Ever-lovin’. God!
Surely, you are paving your path to heaven lately. Or at least to a glass of wine.
I think my head might have exploded on your behalf reading that tale. Uffda! (Yes I’m a Norwegian from northern MN.)
I have a friend that has 4 daughters, the youngest is now 13. (I know, yikes, makes raising one seem like a piece of cake!) She told me that in her experience, girls get PMSy (that’s a word, right?) for about a week every month for about a year before they get their first visit from Aunt Flo. I’d agree, looking back on the year previous to my daughter’s first cycle. My daughter got hers in Dec last year & she’s been much better. Still a typcial 13 year old, but better than she was at 12! Hormones suck. = )
Have a great day & hope things get better soon!
This has been a test of the emergency braincasting system.
If it had been an actual emergency you would have been instructed to punch out the lights of selected specialists.
Remember, stupidity is not illegal in this country….just rampant.
Actually, I believe stupidity is illegal for people posing as specialists…who have actual licenses.
I’m so sorry that you are going through this. Allergies are the worst–they are so HARD to figure out.
I’ve had two sons with ectopic eczema, and the one who had it the worst had itchy, red, scratch-till-you-bleed type skin. We finally got the right combination of ointments and creams which worked (when we got him to use them–reminded me of Chickadee). He wouldn’t wear shorts in public for about seven years.
Here’s hoping it gets worked out soon, and with a minimum of head-banging-on-the-walls.
There is no way in heck I would be a nice and sweet as you Mir. I’m afraid I would go off the edge with this New Specialist person. I mean, seriously?
Oh, your Dad cracks me up…struck by lightning. He He
There are no words….Ugh…Bravo. My head would have exploded long before now if dealing with the same stuff.
Oh, fun. My daughter was scheduled to have a skin patch test recently. I dutifully took her off all three of her allergy meds, 7 days in advance. Then I gave her a cough suppressant at night because she had a cold and couldn’t sleep without it. How was I to know there was an antihistamine in the cough suppressant? And lo, there was much weeping and gnashing of teeth when we hath discovered my mistake. I rended (rent?) my sackcloth dress. I cried. And we she had blood drawn instead. (Skin testing is superior to bloodwork, fyi, so if she had bloodwork before maybe that’s why she’s having a patch test this time.)
I have no idea why I shared this story. It’s just that sometimes you’re the pigeon and sometimes you’re the statue, I guess. In my story, I’m pretty sure I was the pigeon and my daughter was the statue. Yours is different.
If Chickie does turn out to be allergic to nickel, you’ll need that kit to swab every piece of her costume jewelry.
I have no desire to hand out assvice…but since you’ve mentioned before that her rash gets worse in the heat/sun I thought I’d mention this http://dermnetnz.org/fungal/pityriasis-versicolor.html . My husband was just diagnosed with it, after it first appeared a year ago – this year there’s been a lot more and I finally convinced him to get it checked out. If not, or you’ve already ruled this out, just ignore me.
I literally can feel my heart rate rise when I hear stories like this about how insanely difficult it is to get medical care in this country. I can think of few things that anger me more.
I just feel so bad for you with this whole situation – we’ve had our share of doctor issues, but you’ve really been through the ringer with this one.
I may be asking a dumb question (and am showing my bad memory), but was she having symptoms when she lived in the Northeast? Or did they start when she moved down to GA?
What the…? Holy hell, Mir, I give you a WORLD of credit for not flying to Emory on the strength of your own irritation and kicking someone repeatedly. I really hope that somehow, this *is* it and you can just treat the darn rash appropriately and get out of this awful loop you’re in.
$500 for a patch?! If it were my itchy kid, I think this level of frustration would have driven me to do the 5Â¢ test: Tape an actual nickel to her belly and see what happens. Of course, I’m really cheap and not the mother you are, Mir, so never mind… Except if that “Specialist” at Emory makes the same suggestion – then give me his address and I will bill HIM. Gah!
Mine was wearing jeans and hoody in (feels like) 100 degree weather yesterday. She doesn’t have a skin rash, but is roughly the same age as Chickadee. And I seem to remember my now 16 year old doing the same thing for a few summers. Last summer, I was worried there was something wrong…you know, body image, or something like that, but she swears she’s just “likes jeans.” I’ve given up the fight and just remind her how hot she makes me just looking at her.
I really hope that they figure something out soon, for all of your sakes!