Well our jouney started in February of this year and we are still trying to pin-point my son's nephrotic syndrome. We ran some genetic testing on his LAMB2 gene which came back negative, so he does not have Pierson Syndrome, which is good. But we are now back to phase 1. He is steroid resistant, so that will not work. The good news is that his kidneys are still functioning great, no change there. He is growing and is super smart, but he is still leaking protein.
Right now he is on one Albumin infusion a day, 5 oral meds, one weekly injection and one monthly IV for his anti-bodies. It is so hard to see your 2-year old go through this, but he is so amazing. If he did not have his pic-line in his arm, you would never know he was sick. He runs around and plays all day just like his 3 year old sister. Watching my son go through this, really makes me appreciate what is important in life... But the unknown is hard to deal with...
Is there anyone out there who has an un-diagnosed Nephrotic Syndrome? Just wanted to see if I could get some insight...
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