We finally have a diagnosis for Allie. She was in the hospital 2 weeks ago for 3 days of high doses of IV steroids. Her urine proteins went to 4+, and found out after her lab work her albumin and blood protein levels went down. She was retaining fluid, so was fluid restriction and lasix again. My baby is just going through so much. She also had a kidney biopsy.
I got a call from the doc last Tuesday. She has Focal Segmental Glomulerosclerosis (FSGS). Basically, there is alot of scar tissue on the filters of her kidneys, which is preventing them from working properly. Up until now, she has had little to no response to her meds. The dr wants her off of cytoxan and is putting her on prograf, but the insurance will not pay for it unless I get it directly from them through the mail. It's a very expensive med.
I have to call the dr on Monday because they were supposed to have called them on friday, but as of yesterday, the insurance co didn't have anything in their system. It's a pain.
Eventually she'll need a kidney. RIght now her kidney function is good...and the good thing about kidney transplants is you can get one from a living donor. There is no waiting on long lists for someone to pass to receive the organ you need.
So, that's where we are now. I'm sad that we are dealing with this, but relieved to know what we are dealing with.