Children with nephrotic syndrome
Submitted by MaureenCaster on Fri, 11/22/2013 - 18:21
My son is 14 and has had this disease since he was two. He is currently on a combination of steroids and tacrolimus. We have been unable to wean him from the steroids successfully for some time now. It has been suggested by his doctors that we consider Retuxin. I don't know much about this drug or treatment with it. Has anyone been on it? How did it work? Would you recommend it? Thanks.
Submitted by Lisa2012 on Mon, 09/16/2013 - 01:10
We have recently moved to Singapore and are looking for other NS families to connect with. My son is 9 and was diagnosed with MCD in October 2012. I have tried searching under the "Find Patients/Families" tab but it doesn't seem to work for me (no matter which country I select!)....any tips on how to get it to work? Thank you!
Submitted by V Friend on Fri, 09/13/2013 - 21:54
I have been told it is rare that my son first got diagnosed with MCD/NS at the age of 13. So I was wondering if anyone else on here has had a similar experience.
Submitted by christian00 on Sat, 09/07/2013 - 16:38
I am curious about statistics on when and how often MCD develops into FSGS. Is it based on a genetic link?
Submitted by christian00 on Thu, 09/05/2013 - 10:11
Hello. Does anyone have a teen or preteen whose protein levels tend to fluctuate. My soon has been testing between trace and 1+ for the past week or so. However, he does go back to negative without any meds. Has anyone else experienced that? If so, is it a cause for concern? My son is also physically active and plays jr. high school sports. Thanks.
Submitted by s-a-h on Sun, 08/11/2013 - 19:32
My son got cold and his uristix is showing ++++ for last two days. He has severe pharyngitis infection. Can uristix go down on its own? Can he achieve remission? I am giving him augmentin.
Submitted by mmtx on Wed, 07/17/2013 - 02:00
Hi, I am Mark M in TX. My son has had a relapse following an immunization with the flu vaccine. Still has complications following treatments. I am a medical professional and am researching these types of reactions. Can you provide details of any reaction you or your loved ones may have had related to immunization (flu shots or other immunizations), dates, complications, has condition improved? Anything you can do to help would be appreciated. Thanks in advance for your assistance.
Submitted by rhondasmith on Wed, 06/26/2013 - 18:02
HI i have two kids with nephrotic my daughter who is 11 and my son 7 both were dignosed with it around age 4. is there anybody out there that have mulitple children with nephrotic syndrome? and lives in Michigan?
Submitted by rhondasmith on Wed, 06/26/2013 - 17:57
Submitted by pferrari316 on Mon, 05/27/2013 - 16:10
My son was diagnosed with MCD in January of 2013. He responded well to steriods when he first got sick, then relapsed twice: once in April, and then again in May when he was on the tapering off schedule from April's relapse. He has just started a 12-week course of Cytoxan (cyclophosphamide). This is given at a much lower dose than cancer patients from what I understand, but have any of you had your children on this med and if so, did he/she experience side effects from it? Thanks so much and I'm really freaking out here!