Mia was diagnosed with Nephrotic Syndrome right before she turned 3. We noticed that she was swollen around her eyes, and her belly was getting very large. I just thought maybe she was dealing with some kind of allergy, but that was far from what we were dealing with. She spent a week at Riley’s Children’s Hospital trying to get a definitive diagnosis. It ended up being Nephrotic Syndrome. We were devastated and completely lost.
By the time Mia was 10, she’d had 18 relapses. She had a very bad year in 2015 when she became steroid-dependent. We tried many drugs, including steroid infusions that made her gain 25 pounds of water. She was so swollen she couldn’t even walk, but after a few weeks we were able to get it under control. Since then she has gone on Tacrolimus, which has done wonders for her! She has been in remission for four months now and has started weening off the steroids. She is doing great right now and we couldn’t be happier with that!
Stay strong and know you are not alone! Try to find others that are dealing with the same thing. It helps to have others to talk to!