JIA - any experiences?

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 :roll_eyes:) 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.

My daughter was diagnosed with juvenile arthritis a few years ago. This is without any other inflammatory type conditions, and one outbreak of psoriasis. At the time that things were at their worse, she was also diagnosed with epilepsy, so we just put out the small fires of joint pain. Honestly, I just recently had her on a week of nsaids, and she’s doing better.

At this point she’s refusing to see a rheumatologist, but when she does I’ll probably start her with the family rheumy, because we have one.

Thanks @Stoney, yes mine is a very reluctant patient too. As this is the first episode that’s been blindingly obvious to me, I will also go with the NSAIDs (under GP advice) and see if we can tamp it back down for a while before escalating it.

I’m just a bit worried about the NSAIDs due to previous bowel indications - but I can only do what I can do!

So did your GP end up giving you the diagnosis then?

She saw a pediatric rheumatologist. Super smart woman, explained all of the detailed lab work. The fun additional news that she gave us is that she already has anti thyroid antibodies, so it’s just a matter of time before her thyroid gives up. The fun never stops. The good news is that she has no gi complications like your daughter has. She was around 14 when this started and 15 at diagnosis, I think. As I said, it was all a bit of a whirlwind at that moment.

Yes, epilepsy and thyroid problems forecast, an awful lot to deal with! Well hopefully the worst of it will stay away for both of them!

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