We're half way through her first step down again, and seems to be doing well. Her proteins fluxuate between neg (0) and 1+, but as long as the 1's are occational and the negatives are the 'norm' then everything is good.
So roughly another week of 30 mg prednisone every other day. Then if all goes well we can step down to the next level.
In the mean time we continue with life. Ada enjoyed two weeks of swimming and did really well. She is sad that we have to wait now till after the swim season for lessons to start up again.
2 comments:
As sad as it is for our daughters it is so reasuring to know that someone else is making it through this journey. I was amazingly suprised at the similarities and I am so happy to see you blog. I hope she is doing well. Calli is starting her taper on Monday. She was diagnosed 1/17/08 and she just finished her 3 relapse. We are doing an everyday taper this time becuase she has yet to make it off the steroids, relapses every time we get to 5mg every other day. She is on 30 every day too. They have hinted at cytotoxin (sp?) and I am praying we will never need that. How has the low sodium diet been going for you? We are finding it horribly hard this summer with travel and she craves SALT! She begs for pickles etc and it breaks my heart. I don't want her to go back on her bloodpressure meds but I still want her to feel like a kid and not have to eat a different diet you know? We live in Montana and see a Nephrologist from Seattle Childrens, THEY ARE FABULOUS! It was the most reasuring feeling after our visit with them. I am a nurse so I would rather just know what's going on then not know what to expect and after our appointment I was scared but felt like I could finally breathe! I would love to hear from you if you would like to email my email is tinacolada4u2@hotmail.com I will keep your daughter in our prayers. Tina
Glad to hear that things are going well. I will keep my fingers crossed and all of you in my prayers.
How wonderful to read, also, that others in the world going through similar experiences and you can all strengthen and support each other. You are doing good things here, keep it up!
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