July 9, 2010

The other day I was desperately trying to find someone who understood what this is like. I pretty much felt alone. I came across a blog that is on the arthritis.org web site and a mother was pouring her heart out about her 12 year old daughter and the adversity she faces living with JIA (Juvenile Idiopathic Arthritis) – this name recently replaced the JRA (Juvenile Rheumatoid Arthritis) as they have learned that Juvenile arthritis does not follow the same pattern as adult arthritis and that even into adulthood the pattern continues to be different.

Anyway, I found her blog, read it and re-read it and read it again. I could hardly believe the things her daughter has faced, yet I felt so much connection to her story.

Sadie took a trip to spend some time with her Grandpa and Grandma in Oregon recently and this was a big deal. I hold a pretty tight grip on this girl and some of that is based around her medical care. It wasn’t easy having her gone and since she has been back it has been horrible to watch her pain. I don’t’ think her trip had anything to do with it; her knee was bothering her a lot before she left and I was ready to squash all plans at that point, but we proceeded to let her go. She had pain, she would call me and let me know… ask what she should do and then there were the times she took the initiative on her own to take some aleve or avoid an outing. Luckily Grandpa loves to fish and fishing doesn’t hurt and SHE LOVED IT.

Right before her trip we saw Dr. W and during the time she was gone I was talking to the nurses, who were talking to Dr. W about some new things popping up with Sadie. It was agreed that she needed to be seen again (3rd appt in 6 weeks) and that we needed to scrap the plan and start from scratch.

That said it leads me back to this blog. On this mother’s blog she was reflecting on where they had been with medications and treatments, etc. I loved the format and thought it would be a good time for me to reflect on the same as we move forward with another change. I am taking the idea from her and using her format as I thought it was very well said and well laid out. After I started typing in though I realized it is really long; so I have linked that to the tab above. You can click here to read it if you would like.

To give you a quick (as if I do anything quick) idea of what is next; Sadie had her last injection of Humira on Tuesday; starting next Tuesday she will be going back to Remicade. There are some other medications on the table, but I felt Remicade did a good job for her and I am hopeful it will do well for her again. Dr. W will follow her progress very closely, she will go back in 6 weeks (at which point she will have had 2 infusions) and then again in October (after 4 infusions); if at that point there has not been some significant improvements we may more to types of medications that are newer on the market and are outside the families of drugs we have used thus far.

The start of Remicade will be Tuesday and then two weeks later and then four weeks after that. The prayer around this should be that it works quickly and effectively and that no tolerance has formed in Sadie’s body against the medication. Sadie is actually looking forward to her infusion!