9 yr old with Positive Dual ANA (for the last 3 years)

Good day everyone,

My son's first positive ANA (Dual pattern) showed up when he was 6 yrs old. He's had a positive ANA pattern since then (for 3 yrs now). Positive ANA Screen, IFA; Speckled Titer: 1:160 / Homogeneous Titer: 1:80. I first suspected something was wrong because there were days he could hardly walk and he would cry due to pain and he was losing weight (he's super skinny). Background: He was born a preemie with a severe heart defect. I have MS / Fibromyalgia, his older brother has Scleroderma, and figured his pain was probably something auto immune related as well. Most recently he has swollen lymph nodes in his neck, red swollen lips, a rash on his face, and peeling fingers.


His pediatrician has a wait and see attitude. They suggested diet change - which we are doing (for the last 3 years). Gluten free (grain free if possible) and dairy free. He's now 9 yrs old and still testing positive. We have other things show up in his most recent blood work - low BUN, low Methylmalonic Acid, low Vitamin D (even though we supplement) and low potassium levels.

I homeschool - which is a HUGE blessing. Those days he doesn't feel well we can take it easy and just do light work or a take a 'sick' day. Was wanting suggestions on other things we should/ can be doing? Specialists we should be seeing?

Thanks everyone!

Post Edited (FLMomOf7) : 2/13/2019 5:27:37 PM (GMT-7)

Wait and see? Not even any Plaquenil to inhibit disease progression? That doesn't sound very helpful to me.

I would suggest an rheumatologist -- they are the specialists who deal with the details surrounding ANAs. Most auto-immune diseases are diagnosed with a combination of symptoms in the presence of an ANA.

In general, the speckled pattern is found in SLE and other connective tissue diseases, while the nucleolar pattern, with a few large spots, is found primarily in people who have scleroderma.

Take a look at our Lupus 101 thread for lots of other information about diagnosing Lupus and seeing a Dr for the first time.

Suggesting dietary changes because of a positive ANA test result is, well, absurd. Red flag #1.

Saying it's a good sign that ANA numbers dropped a bit is ignorant of how ANAs work (they don't correlate well with any disease activity). Red flag #2.

Not sending your son to a specialist is weird. Red flag #3.

This pediatrician is out of his/her league trying to treat something that only a specialist should be treating.

Get a referral and consider a new pediatrician.

My son began exhibiting symptoms associated to Lupus and RA as young as 7, our pediatrician at the time had the same attitude. I had to fight and fight with him just to test my son because I knew all to well the signs and because my son was so sick, especially when he tried to act like kids his age and play sports, we live in Texas and the sun and heat would do him in. I fought with doctors for years, finally after switching to a friend of mine who is a primary care doctor when my son was a teenager I was able to get the proper labs and a referral to a rheumatologist. My suspicions were right all those years, my heart broke when the rheumy told my son and I he too had Systemic Lupus and Rheumatoid Arthritis! The doctor began treating him that day but did not mark his charts with a diagnosis because my son had not begun college and this was before preexisting conditions act had gone into effect. My son was officially diagnosed or labeled at 19, he will be 30 soon. He began with plaquinel, then as his lupus and RA advanced was prescribed an immunosuppressant, he currently takes Imuran. My advice to you is do not let these doctors tell you “let’s just watch and wait” I kick myself for letting my son suffer for so long.

Stacie

The cold does affect us, but in a different way. We can tell when a cold front or storm is coming because our bodies will start hurting usually or we might get a migraine. While it is hot here in Texas we do live in the western portion so we have very little humidity, unlike you in Florida. I have family that lives in Florida and I hardly visit because it is so unbearable for me.

My son does work. He is a teacher and teaches college courses at a dual credit STEM school and he owns his own drone business.

I was wondering about Lyme as well. I was dx w/ Chronic Lyme and Chronic Active Epstein Barr (most western Doctors don't recognize either of those) my doctor said they would just treat me for MS / Fibromyalgia but they have me on long term Valtrex for the EBV and I just got done with long term antibiotic treatments for the LD. I read that pregnant mom's can pass down Lyme to their children. Doctors did test him for both LD and EBV, both were negative (it was through Quest)...but a negative test result for the Lyme doesn't really mean anything since it can be dormant and not show up on blood work. We do need to have him tested with a good lab - wish it was covered by insurance, it's so expensive!