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Need support about young daughter's test results

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Posted 4/23/2013 8:38 PM (GMT 0)
My daughter who is 5 had a positive ANA at 1:160 and an equivocal DS anti DNA test at an index of 1.06 (positive was >=1:10).  I think that test is what is upsetting me the most since it was not negative.   

We saw the rheumatologist today who did a through exam and said that my daughter seems fine.  She has no joint troubles (she had been complaining of off and on pain in her legs) and no other symptoms of Lupus.  And the blood work could mean something or not.  They want to retest her in two months and maybe add more blood work.

I guess I am just looking for support and advice about how to deal with the waiting in between appointments and the wondering if something really is wrong.   I feel better that she is in good hands but I guess part of me wanted her retested sooner.   The hard part is the wondering and almost just waiting for something to go wrong with her.  I want to just put this aside and enjoy her and my family.  I am glad she was checked but I just wish it was more clear cut.  She is sick or she is not.  Then I can just deal with it either way. This limbo is so hard.

Sorry for the ramble.  This is so new to me. 

Posted 4/23/2013 9:04 PM (GMT 0)
You have correctly identified one of the most maddening things about auto-immune disease -- it doesn't have clear-cut definitive blood tests. The diagnosis by symptoms means it often takes a while before diagnosis.

Limbo can be agonizing. It is important to try to keep your head in "today" and try not to spend your energy on "what might happen". If something does come up, it will need your energy then!

Unless your daughter's symptoms become more regular or more severe, it isn't practical to retest sooner as you'd most likely get the same non-decisive results.

And even those of us who have been diagnosed have days when we think it all must be a cruel trick, as we feel good -- but inattention, missing meds, or doing too much and symptoms reappear. We all have to trust the experience and training of the Drs who are treating us.

Best wishes,
Posted 4/24/2013 4:29 AM (GMT 0)
I liked to have drove myself batty when my allergist told me he thought my rash on my legs was autoimmune related. He did a blood test and it seemed like forever for the results to come back and then forever to get in to see the rhuemy and get his opinion.

Try to be patient and not fret too much. You've got an answer right now "watch and wait", the 10th level of H. ;)
Posted 4/24/2013 2:14 PM (GMT 0)
Thanks. I guess I am like everyone I want an answer RIGHT NOW. Especially since it is about my child's health.

I will try to just take it one day and one step at a time. The two month visit then wait for the results then hopefully have good news.

It is just so darn confusing. She may have a positive test for ANTI DS DNA or it may be negative (her result was equivocal) or a bad test. It may mean something or nothing. She may develop Lupus later in her life or not. 10 level of H is right.

Trying to just breathe and enjoy that she is healthy right now.
Posted 4/27/2013 7:19 PM (GMT 0)
When I was 8 I had extreme pain in my legs. They did every test imaginable and finally decided that I grew too fast. My question is did you daughter grow extremely fast? It could be that. A lot of children and adults are lacking in GLA. Look it up on the computer to understand it. You can ask your doctor if it is okay to give her Evening in Primrose supplements, which will take care of the GLA problem. If this had been done for me then I more than likely would have never had lupus. I hope this helps and didn't leave you with more questions than answers.
Posted 6/5/2013 3:08 AM (GMT 0)
My 5yr old daughter has been complaining about the back of her legs behind her knees hurting occasionally for the last 2 years. Sometimes it hurts so much she cries and needs ibuprofren to ease the achiness. I brought it up to her doctor. Her doctor suggested doing an xray of her legs. She has also had pneumonia 3 times in her life so far, none that required hospitalization.

I was just recently told that I am ANA + and RNP +, possible diagnosis of Lupus or MCTD. Should I take my daughter in for ANA testing due to her symptoms and my positive test results?
Posted 6/5/2013 3:11 AM (GMT 0)
I'd get her checked out just to be safe.
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