Discuss your experiences with nephrotic syndrome here.
- By Shawnsmom · July 7, 2008
- 10 replies
- My son was diagnosed in Feb 2008 w/ Nephrotic syndrome but we have not been able to label it. He is negative for FSGS and such but still leaking a lot of protein. Just wanted to see if anyone else has ...
- By HH · June 19, 2008
- 12 replies
- Our son was diagnosed with neuphrotic syndrome last september. It is assumed he has minimal change disease but without a biopsy the doctors say that is not a for sure diagnosis. He has been on prednisone ...
- By duker · May 31, 2008
- 7 replies
- Hi All, My 6 yr old has MCNS w/mesangial proliferation and is steroid dependent. She is currently on prograf and cellcept and steroids. The steroids are destroying her body. Her bones are terrible and ...
- By myboynadiva · May 27, 2008
- 7 replies
- ~Hi! My name is Jen and my 6 yr. old son has MCNS. He was wheened off his pred. 2 wks. ago and his levels are starting to go back up again. This is exactly what happened last time... he was off his meds ...
- By mwl_NCF · April 30, 2008
- 0 replies
- The latest issue of the NephCure Now! e-newsletter is out. To receive a copy, please contact Miriam at mlong@nephcure.org or call 1 (866) NephCure. The NephCure Foundation ...
- By Vanessa2 · April 26, 2008
- 6 replies
- Help! Can anyone share on how they controlled a baby's (20 month old) eating and the terrible weight gain that happens so quickly ...
- By melj · April 24, 2008
- 4 replies
- My son has steroid-resistant nephrotic syndrome. The biopsy revealed MCD, although the nephrologist says it is likely he has FSGS. His protein loss has gone from over 2g in 24 hours to around 900 mg in ...
- By abiyari · April 17, 2008
- 10 replies
- I read on another web site that a mother is giving her son his medication (prednisolone) in an empty capsule to eliminate the bad taste and the burning sensation. I think is a wonderful idea, my Yahriel ...
- By myboynadiva · April 14, 2008
- 3 replies
- ~Hi! My name is Jenny and I have a 6 year old son who was diagnosed with MCNS last November. He was wheened off the pred. and was in remission for 3 weeks... He had a relapse and we are currently in the ...
- By Crowley · April 11, 2008
- 40 replies
- Our daughter Mackenzie died Tuesday, April 8th from a large blood clot that stopped her heart and lungs from working. The blessing is that she died instantly and we were with her so she wasn't alone ...
- By kbarber2007 · April 7, 2008
- 7 replies
- Our daughter is in her first relapse since being diagnosed with MCNS. Her nephrologist has uped her dose back to the 1 tsp twice daily. I was wondering how many days does it usually take for the prednisone ...
- By lalo · April 4, 2008
- 7 replies
- So...I was wondering what a few of you parent/advocate people might say about this situation, My 3.5 year old daughter is biopsy diagnosed MCD and is on cyclosporin. She relapsed frequently and long on ...
- By tr9736 · April 3, 2008
- 11 replies
- 2nd line drugs are very confusing... I've read so many posts of different drugs once you become pred dependent, resistant, etc... I am confused as to what determines the 2nd drug is used? Cytoxan, cyclosporine ...
- By nnpalmer · April 2, 2008
- 0 replies
- Free Patient Education Seminar in Portland, OR Interact with other patient families and medical professionals from the field of Nephrology. This is a great opportunity for patients and families affected ...
- By eshirley · April 1, 2008
- 0 replies
- Please read the note below and make plans to attend. This is an amazing program with awesome facilities. The camp is free for the entire family, you only have get yourselves there and there are some organizations ...
- By kbarber2007 · April 1, 2008
- 11 replies
- I need someone to tell me that I'm not crazy!!! My daughter was diagnosed in January 2008 with Minimal Change Nephrotic Syndrome and has been on prednisone ever since. We began testing her urine daily ...
- By Shawnsmom · March 31, 2008
- 5 replies
- My son is 22 months and was diagnosed w/ NS in early Feb of this year. We are still waiting on a firm diagnosis but I was wondering if anyone has experience with changing their diet to help the kidneys ...
- By tr9736 · March 29, 2008
- 4 replies
- My son Eric (2 yr old diag on 1/2008) is being tapered off pred -- currently 14cc every other day. Treatment was supposed to be 4 weeks at that dose -- well, after 2 weeks, I'm seeing a '30' on the stix ...
- By duker · March 29, 2008
- 4 replies
- Hi, does anyone have this diagnosis? my daughter (6) has been battling this since age 2.5 and we are always against a brick wall. she does not respond to meds that others do. right now we are on 14 meds ...
- By ness1 · March 29, 2008
- 14 replies
- My son stopped responding to steroids after 4 years and the doctor put him on Levamisole which is a drug primarily used for colan cancer. He had to take these for a year. He never relapsed on it and has ...
