My daughter has had some unusual joint aches over the last few years - just a couple of unexplained sore joints that suddenly pop up and are literally gone the next day.
This week, she has had lower back pain that is worse at night, gets better during the day and was worsening over the week until yesterday.
Because she has had major stomachs symptoms for years (and I’ve recently been diagnosed with Crohn’s), I had an MRI done of her torso in March. Back then, it showed bone marrow oedema indicative of sacro-ileitis, but there were no symptoms in her back, so we focused on the bowel abnormality it found.
By the time she got to the paediatric gastro, she was in low disease activity, they did an ultrasound and couldn’t see anything, and all that was dismissed (again).
Now the GP thinks she may have JIA. The classification I’ve seen online seems to suggest though that axial JIA is very rare.
Has anyone had experience with axial symptoms in children? Given our experiences with the gastro, I am just wondering if we will get to a Rhuematologist and get dismissed (again) because it doesn’t tick a box. So I’m wondering if we need to wait until it is worse and therefore more obvious.
Unfortunately with the stomachaches, I’m pretty sure we’ve been tarred with the brush of childhood worry tummyaches (cause they cause fevers and bowel wall thickening ) and if she does end up with Crohn’s, it’s going to be a massive fight to get diagnosis. I don’t really want that happening with the arthritis as well.