What is a flare up & how severe before they will treat it?

Popsicle

I'm hoping maybe someone can shed some light on this for me? My son has JIA as of January, he had a steroid injection in the top of his left foot as couldnt walk properly, swollen, etc, etc. The injection was done nearly 4 weeks but now his ankle in the same foot is looking very mishapen and bulges outwards. He is stiff after any inactivity again but not limping like he was before and still able to run around but the swelling is worse the more active he is.
Is this classed as a flare up if its not causing him to limp but is just swollen from time to time?? They wouldnt inject his other foot or knees when they did his left foot as they said there was no sign of the arthritis in those joints at that point in time and therefore nothing to treat but why are they still swelling up? His knees look really mishapen some evenings but then fine again the next day. Is that typical of JIA that the swelling can come and go from day to day? We are due to see the consultant again asap as it looks like its spread but i'm worried they'll say theres no sign of it there again - i've started taking pictures of the swelling now to show i'm not mad!
Also (sorry another question!), does the mishapen look that the JIA causes go with time? Both of his feet do not look normal any longer, he has no instep at all and tends to lean inwards on both feet too. The physio was really pleased with him (although that was before the stiffness and swelling started again) but i worry that the almost deformed look hes got at the moment may be a permanent thing.
He is only 2 so i know that bones, etc are all still soft at the moment but i'm starting to worry about the summer coming up and people wondering whats wrong with his feet!
Thank you in advance for any help anyone can offer. Very glad i found this site - its so reassuring knowing that there are people you can turn to for advice, etc who have been there and done it or are experiencing similar things. I dont think other people quite understands the impact it has and the worry that comes with it. I know it could be a million times worse but it is made so much harder not being able to have a definitive answer as to what the future holds.
Hope everyone elses little (or big) ones are doing well!

stickywicket

Your poor little fellow is really going through it, isn't he? And you, too, as his parent.

I honestly can't answer your questions, Popsicle, but you are doing the right thing by taking him back to the rheumatologist asap. He is so young I suspect the normal 'rules' as to what happens in both the immediate and later future will be very different from those for adults like me and possibly also for older children. As you say, his bones are young and still forming. That might work in his favour.

Is he on any medication? If, so far, he's only had the steroid jab(s) I think that will be the next step.

I'm 100% sure that you're right about others not understanding. They don't understand with adults like me. They didn't understand when I was first diagnosed at 15 so I'm sure they haven't a clue about small children. Indeed, I think some people find it upsetting to think about so don't think about it. How helpful is that :roll:

As far as the future goes, we all worry about our kids no matter how old or how healthy they are. I know it's virtually impossible but I'd say, as far as possible, don't worry about it. Do whatever you can for him now. That will help to improve his future. I've had RA for over 50 years. There's been a lot of pain, several new joints and difficulties but I consider I've had a very good, fulfilled life. I know some very healthy people who are far more unhappy about their lives. There are no definitive answers about the future for any of us. Your little fellow is much loved and that's the best possible start he could have. (((())))