Looking for hope and guidance
My little boy just turned 5, and I am writing this with a very heavy heart because I am honestly scared and overwhelmed.
Over the last 2 years, my son had some tendon findings and swelling in a couple of fingers and around the ankle/heel area, which eventually led us to imaging. Ultrasound and MRI both showed tenosynovitis. We are waiting to see pediatric rheumatology, but the appointment is still far away.
What has scared me recently is that his ANA turned positive this year (it was negative until last September), and he also had positive anti-RNP antibodies. His inflammatory markers otherwise were mostly okay.
He has also had consistently elevated eosinophils/basophils for almost 3 years, usually ranging around 1000–1500, once or twice closer to 1700, but they usually come back down again. His doctors had mostly connected this to severe eczema/atopy. He has been on Dupixent for eczema, and honestly Dupixent gave him his life back from the skin perspective. His eczema is very well controlled now.
But now with the ANA/RNP and tendon findings, I am terrified that we are walking toward some connective tissue disease or autoimmune diagnosis. Today the orthopedic doctor who looked at the MRI sounded much more concerned than the pediatrician and even more concerned than the rheumatologist who briefly reviewed things online and told us to wait for the in-person evaluation. I am attaching his MRI here, the orthopedic told that there is synovitis in two fingers which is not expected in a kid his age.
I think what is breaking me emotionally is that he is only 5. He has already gone through so much with eczema, allergies, eye dryness/redness from Dupixent, bloodwork, imaging, appointments… and now I feel like I am watching every little thing in fear.
I don’t even know exactly what I’m asking for. Maybe just hope, perspective, or hearing from parents whose children had positive ANA/RNP or tenosynovitis early on. Did things stabilize? Did anyone’s child go on to live a full normal life even with an autoimmune diagnosis? How hard are the medications? Is life hanging in by a thread for our family? Do I need to keep looking for everything to figure out and rush if I see something wrong. I can’t see the internal organs but then what can happen? It is an unknown scary situation for me.
I keep reading things about connective tissue disease and internal organs and it is terrifying me. I know nobody can diagnose my child online. I think I just need to hear from people who have been through uncertainty like this.