My 12 year old daughter has a rash that has been recurrnt for the last 18 months. Her face swells and the rash gets all over her abdoman. She had to positive ANA test. the first was in December and it was 1:80 she had another a month ago and it is now 1:640. The doctor has sent us to thedermatologist who sent us to the allergist, he sent us to a rhumatologist and the Rhumatologist said he thought it was Lupus but she has no other symptoms. She tested positive for Anti-centromere B as well. The Rhumatologist can't figure this out and sent us back to a different dermatologist. I also took her to a infectious disease dr. and he looked at her history which includes recurrent bladder infection with multiple hospital stays from 2003 - 2010. He asked if I have spoken with a Nephrologist. He seems to think that the two are related and also both related to Lupus. Do you have any ideas of where I can take her. She has missed over 60 days of school this year due to this and I need real help.
Person's Gender: Female
Person's Age: 12
I am online and happy to help you with your question today.
Ok. Well, it sounds like you have spent quite some time trying to get to the bottom of what is going on with your daughter. I am sure that her previous doctors have thought of, and ruled out, all of the common and easily treatable conditions that could be causing her issues, including possible Lupus. Would you say this is a correct statement?
Well I think it might be time for you to take a very difficult, and bold, step to see if your daughter can get some relief. It seems obvious to me that her current doctors have reached the bottom of their bag of tricks and, yet, she is still having these problems and continues to miss school for all sorts of tests and running all over town for various doctor appointments . I think that one of the problems is that all of the doctors don't have a good idea of what the other experts are thinking or doing. Is this something that I'm going to be able to figure out using "chat" as my only diagnostic tool? Of course not....I'm good, but not THAT good lol! I do, however, think I can point you in the right direction.
It sounds like your daughter has been receiving good care from very qualified physicians without any significant lasting improvement in her condition. At this point I think the best thing you can do would be to gather up copies of ALL her medical records and travel to a large University Teaching hospital. At an institution like that she could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall and they all share the electronic medical record system so they know what each other are thinking and doing.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
If you could tell me what large city you live near and how far it would be possible for your daughter to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.
I wanted to let you know that all of these doctors are talking to one another about everything. She is currently on 60 MG Prednisone daily and has been for about a month. Every time they lower the dose the rash comes roaring back with a vengence. She is also on Neoral 200 mg daily for the last two weeks. they tried her on Imuran but it was not successful. She had another outbreak on the Neoral and Prednisone yesterday.
We live in Shreveport, LA
Hmmm.....You are correct. Your daughter doesn't have a simple or common issue. Have they done a biopsy of the rash?
Ok. Well, there are many excellent University Hospitals in the South.
yes and it comes back as urticaria
Ok....no help there...
Dallas is pretty close
I have used Baylor in the past
Yes, and so would be Houston I would expect.
It's not too far about 5 hours
Baylor is an excellent place and your daughter would get state of the art workup and care there.
What kind of doctor would you recommend I see there?
Would you be able to fly into Rochester Mn and go the the Mayo Clinic with your insurance?
I would have to check but if so I would. I am so frustrated and at the end of my rope. I would go just about anywhere at this point
As a father of 5, with a middle daughter who spent the first year of her life trying to die on us (she is now a very healthy 27 year old woman) I completely understand what you are going through.
Since her main presenting issue seems to be this never ending rash I would start out in the Dermatology clinic. At Mayo they would send for her prior pathology slides and examine them over themselves....they never believe other doctors :-)
Ok. then that is where I will start. I really appreciate your help. I feel like I have been going in circles.
We took our daughter there 26 years ago, were treated like Kings and, after a week of staying in hotels, got an answer that finally took care of her problems. It was tough but not as tough as the stuff we were going through before that.
I remember running around that track myself and hope that you can get off of it soon....
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Thank you so much for all your help.
If you have a chance I'd love to hear back from you on how things work out.
My pleasure. I wish you and your daughter the very best.
I bookmarked your page and I will keep you updated. Thanks again
20+ years as a doctor. Internal Medicine Internship in NYC