Grand Rounds to confirm lupus

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HOPE4TJ
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/13/2007 12:23 AM (GMT -7)   
Today I took my daughter to "grand rounds" this is where about 10-15 derms come to one clinic to put their heads together about difficult skin problems.  Taylor's rash started in early Jan.  I took her to the primary peds dr. I thought that it was ringworm.  Dr. took a test for ringworm neg.  She wasn't sure what it was.  Since jan. I have had her in about 6 times because the rash was spreading.  It started on her lower right leg by a bruise that she had for about 6 months or more.  All they did was try different topical creams nothing worked.  Finally I got the dr. to give me a referrel to derm.  The derm gave me a topical cream, it worked at first then made it spread more even on her face.  Three weeks later she finally got back into the derm after numerous calls.  They finally ordered blood tests.  The ANA came back faintly pos. They gave her a prescription for prednisone.  It started to work right away by fading her rash.  I called the dr to see what else they were going to do because she was done with her prescription and the rash was not all the way gone.  They said to just keep an eye on it and we did not need to do any futher tests.  I told them that they needed to at least redo the blood test. So they did they came back neg. but the rash also started coming back.  I went to the dr and said you need to do something if you don't I will when I go to another clinic tomorrow for my other daughter.  The dr called the derm dept. and got her in that day.  They did biopsies and gave us some more creams but stronger.  They set up a appt. for us to see a rhumetolgist.  The rhume noticed that her growth rate has dropped in percentage and her liver enzymes were up.  He ordered a ultrasound of the liver and some more blood work, he also referred us to the "grand rounds"  The derm told me that the biopsies showed results consistant with lupus but this is not the common rash and she is so young.  So she also suggested the "grand rounds".  The rhume also started taylor on plaquein (sorry about the spelling).  She has been on that for about a little over a week.  The rash faded dramatically.  She is starting to get scared I think.  That is my daughter's story in a nutshell (maybe a little bigger, ha ha.)  Now we wait again til tomorrow to see what their treatment plan is going to be.  I don't know if I should get a second opinion or not?  She is also having stomach pain and urination problems.  Well hope for the best.  I am going away for the weekend so I will post when I get back and let you know the treatment plan.

Hopeful mom,
Stacey

stacey
a hopeful mom


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/13/2007 7:58 AM (GMT -7)   
Stacey, what a frustrating experience all of this must have been for you and for your daughter. It just illustrates how hard this disease is to diagnose and how a lot of docs don't really know a lot aout this disease and how it manifests itelf. I give you so much credit for standing up for your daugher and insisting that docs figure this out when it seemed like they were dropping the ball.

I'll look forward to hearing how things are going when you get back. I can relate to a lot of your story because my son was sick with a lot of autoimmune symptoms for over two years before someone was able to finally figure it out and provide a treatment plan that is actually working.

You and your daughter will be in my thoughts. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 7/13/2007 9:45 AM (GMT -7)   
Stacey, I'm so sorry you & your daughter are going through this. It is bad enough when it is us ( a parent). I was dx'ed by a dermy through a biopsy. My ana is a very low positive. It also has been known to go negative. I also went through alot of creams & nothing worked. I have been on plaq for 4 months or so, I still have an occasional rash but nothing like it was. I was told it could take the plaq 6mo to work but I started feeling a little better in 2mo. I do try & stay out of the sun as much as I can. I don't know how you feel about the grand rounds but it sounds very good to me. I think more minds put together could bring you faster results. We all understand how frustrating this is but please do not let your daughter get herself worked up about this. Stress is not good! I hope you get some answers real soon.
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