How Paige is Doing

A lot of people have inquired about how Paige is doing. Right now I am able to keep her swelling down and in control. Yea!! Which is the most worrisome and stressful part of her relapses and why she is hospitalized. Infact she weighed 39.8 this morning, 2.5 pounds less than what I thought was her dry weight!!:) (Her peak weight at this relapse was 55+ lbs, she was completely miserable and so was I.) Her protein loss, which is how we know when we are out of the woods; the best is negative, then trace, 1+, 2+, 3+, and 4+ is the highest amount to measure of loss... which means the kidneys are undertaking a lot of stress. Anyways this morning her protein loss was down to between negative and 1+, the lowest it's been since September when she went into relapse. So I am really excited about that. There is a hurdle that I am trying to overcome. She has to take steriods every other day. The morning that she is supposed to take another dose her protein loss is the lowest, but then by afternoon after she has taken it, her protein is spilling between 3's and even 4's. This pattern has been going on for 3 weeks, when we started to lower the dose amounts to every other day. And that was the time that she pulled off 5 lbs of fluid in one week, before Thanksgiving hit, with all those tempting foods. And trying to travel and keep as low sodium as possible. Tougher than you can imagine! :) As the dosages keep lowering so does her peaks and low poins of protein loss. It sounds simple enough to tapper down her doses at a steadier pace, but since Paige has such unusual responses to medicines and is such a frequent relapser, her doctor wasn't sure quite how to respond, for usually the steriods pull kids out of relapses, not hold them in it longer. So for now until her appointment next week we are continuing a slow tapper. We'll get this figured out yet! :)