some people on another forum recommended that I come here and post - so here I am.
My son is 4 and due to start school in September... in Easter this year he had chicken pox (his younger sister had it 2 weeks before). We were abroad when it happened but he recovered. All was well. Then in early May, he came down with a high temperature and had achy joints - then a rash appeared. This went on daily for 6 weeks. In between all that time, GPs and hospitals diagnosed post-viral infection and HSP.
Finally got referred to GOSH rhuematology team and they think it's sJIA - although they've not really confirmed it. We stayed for 12 days whilst they did bone marrow aspiration to rule out lymphomas, heart echos, ultrasounds of his joints (no swelling found, nothing dodgy found), spleen/liver scans - slightly enlarged.For 12 days he didn't really have a temperature - he was on naproxen though.
Edited - his ESR and CRP are elevated and so was his ALT (up to about 300?!!).
we got sent away to take 6 weeks of prednisolone - 15mg for 2 weeks, then 10 for 2 weeks, then 5. He was doing very well - no aches, no fever, no rash. till the last couple of days of week 6 when he suddenly had a fever spike and a tiny bit of rash. He also had an achy ankle. With the meds, his ESR and CRP were coming down nicely, and his ALT is back to normal-ish.
Rang GOSH who said to continue with the 5mg of pred - and they are due to see us in under 2 weeks anyway.
His temp is still up every evening, not much rash (although last night had more than the last few nights...) and achy joints.
It sounds like sJIA doesn't it???
I'm freaking out now - will I have my active little baby back??!?! could it be some sort of dodgy post viral infection that's just hanging about?!! what's the prognosis??!