Tuesday, January 15, 2013
This is our story in a nutshell.
I'm a member of three great groups where we talk about SOJIA and JIA, mostly other parents, but these support groups have been my lifesaver. No one can understand what it's like unless you live through it or watch your baby live through it. So when one group asked me re-introduce ourselves I wrote this below and thought I would share it. This is our story in a nutshell.
Hi friends. My daughter was diagnosed almost one year ago with systemic JIA, March 7th, 2012 to be exact. Her onset was atypical, no joint involvement just fever, rash, pericardial and pleural infusions and a bad case of Macrophage Activation Syndrome (MAS). She spent 57 days in two different hospitals getting this nasty disease under control and came down with it while I was on deployment (I'm in the Navy) so that last time I saw her pre-SOJIA was over a year ago. I mention that because this seems surreal to me. We make a family photo calendar and the photos from last December where those we took pre-SOJIA and it seems unreal to me that this has all happened. The doctors originally thought it could be leukemia and then she got very bad very quickly so they flew me home and I spent every day with her in the hospital except for the first week. Since her onset we've seen lots of joint involvement, although the inflammation comes and goes quickly. She has constant flares that last between a day to a week or more, and although the fevers are gone the rash is her constant companion. Emily hates the steroid puffiness and her infusions, but she's a trooper and no longer even cries when she gets her IV. She's on bi-weekly Actemra infusions, cyclosporine, prednisone and prevacid. We've finally got her down to only 3ml of prednisone once a day, but her Rheumatologist thinks she may be on steroids for a long time. She was off them for two weeks about three months ago and had a flare and MAS return so we are taking things very slow now. I hate this disease and have made it a life goal to inform everyone I can how nasty it is and to spread the truth about it; it's not just arthritis and it's not the same at RA or osteoarthritis and it has and can kill children. Oh and my pet peeves are anyone who suggests this can be cured with probiotics or tells me their grandma had the same thing in her old age.
I say it's a nasty disease, but today Emily is happy and active and six months ago she was depressed and could barely walk so there is lots of hope for a great future.