Has anybody dealt with this before?
My daughter had an appointment today with a new doc. While not an AP doc, the man supposedly had some exposure to it. I guess I was hoping for more.
My daughter has vitiligo.
She also has a small brown kind of cracked-aligator-skin looking spot on the back of her calf. It has been there for about a year.
Her previous pediatritian said it was ecema and to treat it with lotion. We did so for months and no improvement.
Thinking it might be something else, I decided to use some of her steroid cream (which I had previously stopped for her as I do not believe in steroids for myself so why would I use it for her). I used it for a couple of weeks. No improvement.
Thinking maybe antibiotics - I got permission from her pediatric dermatologist to try antibiotics on her vitiligo. I tried some on her spot. No improvement.
Since we've moved here....so...since April...I've mostly left it alone and occassionally used lotion on it. Mostly it's been untouched and it has not spread.
So the doc today says the problem is there is an indent under her skin and the problem is 'hyperpigmentation" and the indent is from the steroid cream. He leaves the room and I'm thinking...I didn't use the steroid cream for long because of my 'fear' of it and we had used it for YEARS on her chest and under her arm pit being well aware of the possibility of thinning skin with no problem with it...so he can't be right.
So...he comes in again and I tell him that in a nice, non-confrontational way. And he just blows me off. No, she's missing fat under her spot and it has to be the steriod cream.
So I say, "any way to culture it?". And I bring up the vitiligo (which he had NO familiarity with) and point out she has an autoimmune disease and the only other ones that effect the skin, as far as I am aware of, is melanoma or Scleroderma. I am not stupid; I never used the word 'mycoplasma'.
No - it's hyperpigmentation. He did not want to give me a referral to a derm but he did give her 3 other referrals. He also didn't give a referral to a hearing specialist even tho by their own test she is not hearing in the lower ranges. Which can ALSO be autoimmune.
I came home and told the hubby and he's like 'we need a new doc" and more grumblings of 'if it were his kid" and I'm like 'duh!"
So...anybody have any experience with this?
Pip
Pip - Demand the doc give you a referral to a dermatologist. If he refuses, take it to the next level and contact your insurance carrier. Not trying to scare you, but speaking as someone who has had melanoma, ANY skin lesion that doesn't respond to treatment needs to be checked out. Just my two cents.I know, Gale, you're right. I'll start first thing Monday.
Michele - (God, it is Michele, right? my brains now working) - no this is flat and looks like the skin in those lotion commercials. You know, the parched desert ones.
Pip
I would think excema would be the ticket, but have her evaluated by a derm. I know that feeling...we are like mother bears, and I have finally stopped apologizing for it. Oh dear, I'm sorry for the stress of this and the frustration and worry. I'mPip,
Was the dr she saw a rheumatologist? My daughter has linear scleroderma and that removes the fat in the area, but it does not look brown, still I think there can be a fair amount of variation. I think a dermatologist might be your best bet to know what it is, but if she has a rheum they might be able to dx it, if it is localized scleroderma. Don't take no for an answer - it may take a biopsy to learn what it is though.
Good luck,
Laker
Well, yesterday was my AP rheumy appointment and we all went. Which is good because it ended up being an all day thing. As we were leaving I asked my doc to look at her leg and threw her up on the bed!
He looked at it and said "No SD". I almost cried in relief. He thinks its something that got hurt or bruised and never really healed right. No explanation on the thinning leg tho.
Pip
Pip, that's wonderful news, and I bet a huge load off your mind!Yeah, I was under so much stress I had a 'lurker' in my shoulder and it's been months with none of that.
And I've thrown up twice today...I think I have way too much stomach acid from worry. Should be better soon.
Pip
OMGoodness, Pip! You po' thing! It's amazing you didn't flare.I have to check one thing out and then I'll post on the APer thread. Mostly I'm a little better (RF to 260) but I only came down one point from my last set of blood tests. He's making changes.
I don't think we flare after a point - that's why get stupid and think we're 'cured'. I do think the gut is my weak point - I could feel all that roiling and ...bam...lurker! I truly hate lurkers! For PRA it makes you suck in your breath because you're just terrified that pain like a knife is going to go thru your joint.
Pip
< =text/>_popupControl(); Hmmmm....Pip...you have given me something to think about. Danielle has a pink "spot" on her hand and a couple on her wrist which are the areas that bother her the most with her JRA. I will have to mention vitiligo next time I take her to either her primary or to our RD. Great news about your daughter Pip! I'm glad you got good news!! I missed this whole thread the first time around!