We will leave for Dallas... again.... tomorrow. We will be meeting with Dr. Baum, Emma's nephrologist, to discuss the results of her biopsy. I already know that they found auto-immune kidney damage, but I don't have a definite answer on a diagnosis, a "stage", a prognosis or treatment options. I hope we have most of those answers after this visit.
Emma is actually doing well overall, and seems happier now than she has in months. She went through a very difficult phase when we stopped her celebrex a few months ago, she was miserable. She refused to leave my side, not even wanting to see her grandparents that she loves so dearly. It was hard on all of us, and almost killed her papa, but she's much better now and back to her happy little self.
I also saw a huge change in her personality after stopping her methotrexate about 8 weeks ago. She started singing the words to every song she heard on the radio, she's trying to read, she's fascinated with building toys and always wants to draw and color. This is not the same kid I had a few months ago, and I could not be happier with the change. :-)
Her MRI results appear to be normal, which is great news. It means that her foot swelling was almost certainly not from rheumatoid arthritis... if it had been there would be damage in the joints by now. (we will get a second opinion from the Scottish Rite docs just to be safe) Of course it also means that her kidney problems have likely been going on much longer than we realized. :-(
These are her puffy little feet last February.... OMG! I sent these pics to her rheumy and pedi since her feet were always like this at the end of the day. It had already been going on for months when I took these... that was 10 months ago....... so scary.
Tuesday, December 2, 2008
Back to Dallas........
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6 comments:
Aw. Poor little footsies. :(
I am glad she is feeling better and back to her old self!!!
Best of luck tomorrow Amy! We'll be thinking about you guys and crossing all crossables for some good news. Hang in there and keep us posted.
Hugs,
Heidi
I think about you all a lot. I'm sure you have the results by now and I so want to know what the outcome is. I must say i'm slightly confused. So they thought she had JRA but not really? They think it's kidney problems instead that have the same side effects as JRA? I know of your family from the CWD websit and pray for Emma offten. Let us know how she is.
Gretchen
Gretchen - I think they're actually thinking that it is something else besides JRA that is causing the joint symptoms and also the kidney issues. I've heard lupus mentioned a few times by both Nick and Amy and lupus would explain the joint and the kidney issues. I am hoping it isn't lupus, though. That would not be a god thing.
Amy and family, we are saying a prayer for your family tonight.
Hi,
I can't remember exactly how I came accross your blog several month ago, but wanted to let you know that we are keeping Emma in our thoughts and prayers and hope that you have all the answers you need by now.
My little guy was diagnosed at 21 months old in 2006 and just turned 4 last month. He has been pumping for close to 2 years now. I also have an infant daughter and my first born daughter who passed away 4 years ago at 5 years old.
(((Hugs))))
~Tammy, Proud Mom to: Zoe, Zurik and Payge
Thank you all!! :-)
We are doubting the JRA dx's, but it's possible that she has both I guess. Her joints looked good on the MRI, so I assume that she does not have true RA. So many questions... still!!
Her feet stopped swelling within a few weeks of stopping the Celebrex, so I really thought that was the cause of the little water balloons. Unfortunately it was just stressing her kidneys enough to cause the fluid retention.
I will post an update on CWD soon. :-)
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