Re: Please help!!! My 5 year old may have lupus.
Kay, hi & welcome. First, I'm very sorry for your daughter's problems. I'm only a patient obviously, but seeing a rheumatologist makes good sense to me. Here are some concepts you could ponder & read further on.
HOW LUPUS IS DIAGNOSED. There are some very useful "sticky posts" (permanent info posts) at the top of the thread list. One lists diagnostic criteria. You generally need to meet 4 or more to support a diagnosis of *systemic* lupus. (There's also a lesser form called Discoid Lupus, DLE, which isn't "systemic". DLE features rashes that scar &/or depigment, and it also can cause pain.)
ANA IS ONLY A GENERAL TEST. Because ANA is positive in many conditions, not just lupus, by itself, it isn't "diagnostic" of lupus. And ANA can be positive without true disease, due simply to a passing virus or a family tendency. I believe 1:160 is a rather low reading; but because ANA can fluctuate, presumably the rheumatologist will run it again.
OTHER BLOOD TESTS. In systemic lupus, the immune system mistakenly makes antibodies that attack one's own cells. These autoantibodies circulate in the blood, so they can be tested via specialized blood tests. There are only two autoantibodies considered "very" diagnostic of lupus: anti-ds-DNA and anti-Sm. But other autoantibodies are also possible in systemic lupus, so hopefully rheumatologist will run MANY such antibody tests, not a few.
LOW RBC. Anemia is common in lupus, but it's also seen in many other conditions, plus it can exist "standalone". I bet the rheumatologist will look into her low RBC very carefully.
SKIN RASHES. There are multiple lupus-specific rashes. But non-lupus skin conditions (hives, for example) tend to occur quite often in people with lupus. Did her arm/torso rashes itch, scar, depigment, etc? What did they look like? (Mine were mostly targetlike circles on arms/torso; didn't itch, scar or depigment; were extremely photosensitive, meaning sun triggered the rashes & also caused my other problems to flare up. As a child I also had one widespread bullous rash = raised watery, blister-like lesions that itched.)
CYSTITIS. I believe cystitis is common in lupus, but presumably in other conditions, too. I had bouts of urinary frequency & urgency from early childhood, yet was negative for infections, diabetes, etc.
IS THIS LUPUS? Only a specialist can say, of course. I think lupus is occasionally diagnosed in very young children, but I think there are other somewhat similar conditions (maybe juvenile arthritis, for one?) that might cause at least some of the things you cite. In your shoes, I'd want the rheumatologist to cast a wide net, but that's exactly what you'd expect any good diagnostician to do.
I hope this gives you something useful, and that others here chip in, too. When do you take her to the rheumatologist? Stay in touch & drop us updates when you can, OK? Sending your daughter & you my very best wishes, sincerely, Vee