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Falen, I'm so sorry to read about the problems that your 4-year old son is having. How tough on both of you!

You could ask about his rashes. There are several lupus-specific rashes that favor upper torso & are circular. One is called "discoid lupus erythematosus", abbreviated DLE. It tends to scar &/or depigment.

Then there two forms of subacute cutaneous lupus erythematosus (SCLE) rashes. One form of SCLE rash is called annular. In immature form, lesions look like red raised papules; but in mature form, they look like targets (red rimmed with clear centers), then spread outward & lose circularity. The second kind of SCLE rash is called psoriasiform; and it looks like psoriasis but isn't. Both tend to fade without scarring or depigmenting. The anti-Ro autoantibody is VERY common in people with SCLE rashes.

I think it's possible to show lupus symptoms very young. I had many bouts of problems from age 3+, but only learned post-40 that I had the SCLE type.

You could ask if the dr. had *more specific* autoantibody tests run, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, Rheumatoid Factor, etc. The ANA is only a threshold test. And because it's positive in mulitple diseases & conditions, it doesn't provide an "answer"---but it propels doctors to dig deeper.

You could also discuss meds, if he'd been on any. Some people with lupus see their problems exacerbated by certain drugs.

And in other people who *don't* have lupus, certain drugs may induce lupus-like symptoms---a condition referred to as drug-induced lupus erythematosus (DILE). DILE can cause elevated ANA, rashes like the ones described above, fever, joint pain, etc. DILE tends to resolve when the offending drug is discontinued.

Even if you don't have clear answers yet, just to play it safe, you could ask whether he should take sun precautions. (Many people with lupus are photosensitive.)

If anything here catches your eye, I hope you post right back. Again, I'm so sorry for his & your problems; and I hope that his doctors can move quickly to answers. Best wishes, sincerely, Vee (P.S. There are several very comprehensive lupus authors you can find in most libraries & bookstores. One is Dr. Daniel Wallace & the other is Dr. Robert Lahita.)
Hi, Falen. About his skin when he was in the sun: did the redness have a lacelike pattern? Have you described the effect to his doctor? Have you ever heard the phrase "livedo reticularis"? That's ONLY a thought from a totally untrained PATIENT, of course---ONLY she can determine what this effect really is in him, what it may mean, etc.

I forgot to ask if he could have had a strep infection, meaning, can a child have one & it not be noticed? is the question. When I was a kid, many kids still got rheumatic fever. I think it's less common today with newer antibiotics that stop strep infections cold.

Yes, I agree you should ask about other tests, like those more specialized blood tests for specific autoantibodies that go beyond ANA; and also urinalysis.

Did you tell his rheumie about the circular lesions he had some months back? With *everything* he & you remember. e.g., did they itch? Appear after sun exposure? Where did the circles appear? Did they start small & expand outwards, or stay the same size? How long did they last? Did they fade without scarring or depigmenting?

Plus, you could (BRAVELY!) ask if she's even heard of SCLE rashes. I know that sounds awfully "nervy"... but I found out the hard way that many drs. don't know about them. While "discoid" (scarring) rashes have been in the medical literature for decades, and all drs. know about the malar (butterfly) rash, the two SCLE rashes were only given their own names & descriptions in the late 1970's. (My local drs. were ALL completely dumbfounded, but my big-city teaching hopital rheumie & dermatopathologist were not.)

I also found out the two SCLE rashes "favor" certain backgrounds (w. European heritage, esp. British Isles).

Also, you could ask what to do if he gets a NEW rash, in case his dr. would want to order a deep punch biopsy. Lupus rashes have some characteristic features under the microscope & with additional immunofluorescent stain tests applied to the sample. I was told that for biopsy to be done, the newer the rash, the more useful the results.

Also, did you read the "sticky post" with the "alternative criteria"? A world-famous rheumie, Dr. Graham Hughes, listed things seen early on in people who go on to develop lupus. e.g., "growing pains", exaggerated reaction to insect stings, etc.

I so hope that you find he *doesn't* have lupus, JRA, a chronic anemia condition, etc. But should it turn out that he has something in this ballpark, it would be so much better to know now, to get him good treatment & frequent follow-ups. Bye for now, with all best wishes, Vee (plus a huge "e-hug" for your little guy)
Falen, For what it's worth... My SCLE rashes were on upper arms & back. Lesions lasted as long as 2 months or more towards the end (but I had them for 8 years). I felt the worst when the rash was new (fever, fatigue, pain, headaches, anemia, etc.)

When I get the lacelike mottling, it fades very quickly.

I totally understand that you don't want to "suggest" or "ask" things so strongly that the dr. thinks YOU are trying to do the diagnosing. That NEVER works well, besides making ZERO SENSE for patients or moms to ever do! But I think it's good for you to know that there are books available on lupus; there are more lupus rashes than the classic malar; etc. This way, you can be a better judge of what you are/aren't hearing, what a dr. does/doesn't do---to the extent YOU feel is warranted, now or later on.

If you haven't already, I do think you should tell her all the symptoms you've written about here, so she has his full history. You can describe things like a circular rash or a lacelike skin pattern, WITHOUT appearing to name or "diagnose" it, right?

I agree with your sense of treading lightly! She's had VERY little time to "warm up". And good drs. will take the time to work thru things scientifically, instead of latching onto the first possible Dx that comes to mind. Wishing you both good luck at his next appt. & thinking of you both, Vee





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