Just wanted to say hello as a newbie. My son who is 15 was diagnosed with Systemic Onset JIA at the beginning of January after being ill for 3-4 weeks with the usual rash, daily fever and some joint pains, including a 2 day stay in hospital. The first diagnoses were slapped cheek disease followed by viral urticaria, but after seeing a paediatrician and dermatologist a couple of times they were obviously on the right track with their tests and sent us to see a rheumatologist pretty quickly. We are at Birmingham Children's Hospital.
He is taking methotrexate currently orally (has only been taking it 2 weeks) but hoping to move to injections in the next couple of weeks. Currently 30mg prednisolone (it was originally 40) but with a plan to taper off to the end of April and hope the rash and fever don't come back (he was late with a dose one day and the rash immediately reappeared). Also piroxicam and a stomach protector and anti-sickness for the day after the methotrexate. He also had 13 steroid injections into joints a couple of weeks ago under general anaesthetic, which seems to have helped a lot.
I have seen other parents on here with newly diagnosed teenagers with this condition, it would be good to make contact. We have all been rather up and down. His main problems have not been (yet) so much the joints but more feeling generally ill either due to the condition or to drug side effects. He had a day where we had to go to A&E as he was suffering severe confusion and depression from the steroids about 5 days after taking the first dose, fortunately that has passed.
Feeling a bit more positive just at the moment as he has managed 4/5 days at school last week and 3/4 so far this week, plus Duke of Edinburgh training last weekend (which wore him out so he only did 2 hours at school on Monday!). Prior to this he had only been managing at best half time at school though they have been very good. Let's hope the improvement continues though I am concerned what will happen when we start reducing the steroids on Friday. He is coping very well but a bit down that his favourite activities which are sport and music (clarinet and piano) are both rather limited at the moment, as his wrists and fingers seem to be the worst affected.
Anyway, would be interested to hear from anyone who had a teenager newly diagnosed and maybe how you are getting on a few months or years down the line?