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Discussion Starter · #1 ·
Hi ladies,

I hope you don't mind my posting my question here as it involves my niece and not myself.

Right now my sister is with her daughter at a children's hospital in Grand Rapids, MI. Back on Thursday my sister took her daughter to a local doctor because she wasn't acting herself and was saying she was tired all the time. The doc did some blood work and was concerned with what he saw, saying that her kidneys weren't functioning properly. He wanted her to see a specialist and sent them to GR (four hour drive).

Once there more tests were done and her kidneys were found to be functioing at only 20%. A biopsy was scheduled and done and now the update is that the biopsy, in the words of the doc relayed by my sis, "...screams Lupus", but he also said my neice's DNA doesn't match the DNA of a person with Lupus. ??

They've put my niece on meds for the Lupus, but it doesn't sound to me like they've really made a diagnosis. It sounds like the two tests are conflicting each other and the doc took a boatload of new blood for more tests, so it seems to me he's not sure himself.

Any thoughts on this? Any words I can share with my worried sister? I know of two woman with Lupus; one it affects her skin and she has scars all over her face and the other complains of pain in her bones and loses patches of hair.

Thank you so much.
 

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You are most welcome to post here as we hope to help family and friends as well. I am very sorry to hear about your niece - you will all be shocked and fearful and out of your minds with worry.

Lupus affects people very differently. For some people the skin is the main organ affected - it sounds as if one of the women you know has discoid lupus a form of skin lupus that scars. For many people the lupus is limited to joint aches and pains, and various other problems but no major organ involvement or damage. Unfortunately lupus sometimes affects the kidneys very severely and sometimes the damage is permanent, children even more often than adults.
It will be small comfort I am sure but children also respond better to medications than adults and there are many successful treatment stories these days. We have a young woman on the forum who was diagnosed with severe kidney disease last summer who is now doing very well indeed and on maintence meds with no other symptoms.

The doctor was probably referring to autoantibodies called anti -ds -DNA antibodies which are one of the very few specific signs of lupus. So having them does clinch a lupus diagnosis. They tend to be associated with more severe lupus especially kidney disease but not everybody with lupus has these antibodies and having them doesn't mean you will get severe kidney disease and , more to the point, not having these antibodies doesn't mean you can't have kidney disease.

So although the doctor might be surprised and his comment has a certain sort of truth to it, I am sorry to say it does not rule out kidney disease which will presumably have been clearly demonstrated by blood and urine tests and now confirmed by biopsy. As far as I know, kidney disease is treated similarly whatever the cause so maybe she doesn't in fact have lupus. I did think the biopsy showed if it is lupus causing it but I might be wrong about that.

Thank goodness you have doctors who are informed enough to have got onto the problem quickly. Kidney disease is 'silent' until it is quite advanced.

I hope your niece will respond soon to the medicines. You all have to live in hope and inspire her with confidence and soothe her, despite your own anxieties.

Please feel free to ask for further information and support : we will help you all we can in any way. Please let us know how she gets on.

Bye for now and every best wish

Clare
 

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Another possibility is childhood nephrotic syndrome (but no lupus). This usually occurs in younger children and in simple cases is treated with prednisone. In simple cases, children respond very well to just prednisone therapy, and return to full kidney functioning again. I believe about 1/2 will relapse (again easily treated with prednisone usually) and at some point most children seem to "outgrow" the condition.

This little girl sounds though, like she may have one of the more severe forms of nephrotic syndrome due to her abnormal kidney biopsy results. This is treated with stronger immunosuppressant drug therapy and possibly prednisone too. Again, most of these children will return to full kidney functioning after treatment. Here is a good link for you to read:

http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/nephrotic_syndrom/

Good luck with everything. Please let us know how things turn out!
 

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Discussion Starter · #4 ·
Thank you so much for your replies. I'm going to forward your comments to my sister's email, which she can check at the hospital. I'll be calling her this evening for another update.
 

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Sorry I do not have any advice to offer, but just wanted to pass on my best wishes and hope your niece makes progress soon!
Love Lesley
 
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