Any parents of children with systemic JIA?

Decembergirl

Hi,
My son is now 17. He was diagnosed with systemic JIA (stills disease) when he was 13. I thought his condition had stabilised with various medication and treatments but he is having a bad flare up at the moment. It has really upset me and I need to talk to other parents who understand this type of JIA (various other symptoms, not just arthritis). Feel like I'm not coping too well

dreamdaisy

Hello, I am not a parent (they tend to be very busy people so don't post too often) but there are some on here in a similar situation to you, even if their children are younger. I am so sorry to read about your son - my mum had a very poorly child (me) and now, with the wisdom of age, I can begin to understand the stress she faced. It cannot be easy watching your boy struggle with pain and fatigue but 'tis the nature of the beast. Arthritis affects everyone in the family.

As I'm sure you know once it's with you it's with you, the drugs are designed to suppress the immune system but every now and again the arthritis breaks out from its medical prison and runs riot because it can. I don't know what meds your lad is taking but maybe it could be time to contact his rheumatologist? An appointment could give the opportunity to chat things through, maybe he needs a meds tweak or even a change. I still flare (although very occasionally) despite being on a triple therapy, and it does feel like a huge step backwards when it happens.

Now, for you. Not having been a parent I cannot begin to comprehend how you are feeling but one thought that springs to mind is this: do you know any other parents with poorly children? They would be the ones with the greatest insight into your situation (and I sincerely hope that some of our parents on here spot your post). Is there any kind of support group for parents in your geographical area? Maybe your GP could put you in touch with such an organisation. It is difficult to talk to family and friends because they won't have a clue unless they've been there themselves. You could also post on your own behalf on the Living with Arthritis board on here because you are albeit in a different way to us. There are arthritic parents on there who I am sure would answer your post: not many forum members have the 'courage' to look in on here because they find it too upsetting: I have no such qualms. Not only the elderly are affected by this vile condition and everyone needs support.

I doubt I've been of much help but I didn't want your post to go unacknowledged. I wish you both very well and I sincerely hope that things improve for your boy very soon. DD

stickywicket

Hello Decembergirl. I hope some other parents will be along soon but, in the run-up to Christmas, things are fairly quiet on all the forums so I just wanted you to know you are not alone with it.

Some fifty three years ago I was diagnosed with Stills at 15 though the 'rheumatic fever' I had at 11 was probably the true start. It was different then, with no 'proper' DMARDS, but my disease had a few 'off' periods until my first son was born and, after that, it's just been 'on', sometimes better controlled than others. I've been lucky insofar as I've had no 'add-ons'. In fact I tell people I've got RA because (a) they don't understand Stills and (b) it's less complicated.

Dealing with any teenager can be very tough. (I did it twice.) Dealing with one who's flaring with Stills must be even worse. While waiting for replies from other parents, might it be useful to ring our Helpline people? And / or, of course, we're her insofar as we can be of help.

I was lucky in that

Decembergirl

Thank you for your replies. I do feel it would help to talk to others who are going through or have gone through the same as me. Our rheumatology team have set up a Facebook page for the parents of children with JIA but none of them have the systemic version and it seems to be very different. I have good days and bad, like my son, But it's good to know there's a helpline to ring when I'm feeling low.
We are going through meds tweaks at the moment so hopefully it will stabilise again soon. He hates the steroids as they give him moon face.
Thank you for your support and kind words
I wish you a happy Xmas x

stickywicket

I hated the moonface too and I was a few years older than your lad. How difficult for him at his age! I do hope the meds tweak works well and you, too, can have a good Christmas :xmas_smile: