Despite weeks of being really sick and dumping plenty of protein, Abby's kidneys are in great shape.
Actually, we all are nearly certain it is NOT secondary FSGS due to Mito- Ha! Major relief.(need to have daughter remove from the blog when she gets a chance!)
At this point we would expect to see some change, and we haven't.
Clearly, something is still going on, but the longer we go with good function, the more it indicates that her kidneys aren't being affected by the Mitochondrial Depletion.
What is causing it? Still not sure. But, at this point it looks like a far more minor concern then once thought. There is NO proof it is fsgs of any kind, and the fact that they have done so well pretty much rules it out. OF course there are no absolutes, but looking like it is past time to remove that from her list. Whew!
Eliminate the food, and environmental triggers, and Abby's kidneys are much happier.
Many patients with a multitude of chronic health conditions show this type of stress to their kidneys. Sometimes it just happens. It isn't that uncommon.
Do we ignore it? Well no. But, things are surely looking up.
I figure if the SubQ didn't cause them to crash? Yet, she was so sick? Things are definitely looking brighter.
She is still dragging but her insides are no worse for wear. There is hope. We still believe there is something that is treatable happening and getting warmer to finding it. If it is Mast? Then we have lots of room to give Abby a long life with a much better quality of life, we just have to keep moving forward.
It only took a zillion second,third etc opinions to figure it out, but I really feel like at this point the sun is shining.