Wednesday, July 25, 2012

Team EKC- Let's Walk- Let's Reach Our Goal-

PLEASE walk with us September 15, at Gerrard Landing Park in Roswell, GA! Come support Team EKC or donate to Nephcure to help us reach our goal of $2000.  We need your help to find a cure for nephrotic syndrome. The walk is FREE! For more information, or to donate or register to walk, please click the link below. This is our home page link- once there, click "MY TEAM PAGE" to register to walk with Team EKC.  THANK YOU!


  1. My son was just diagnosed with MC/NS a few days ago, although it wasn't as dramatic situation as your daughter's. We are supposed to begin prednisone in the next day or two. I stumbled upon your blog while trying to educate myself about the disease and see if there is anything else I can do to help him, diet, etc. I have see the posts on various forums regarding a gluten and dairy free diet. The neph never spoke of this....did yours? My son has always had milk and gluten with no problems and I wonder if your daughter was the same? Did you change her diet just to see if it would help?
    Sorry for all the questions, your blog just really resonated with me as all the posts really reflected how we are feeling right now!
    Thanks so much,

  2. Hi Mary, so sorry it has taken me a while to respond! It's been a crazy few weeks ( I'll post about it soon). To answer your question, no my neph did not say anything about diet changes helping. I just read a lot about it and thought it could not hurt to try. My daughter was gf and df both for 6 weeks. I came to the conclusion the gluten did not make a difference for her, so I let her have it again, in moderation. Until I realized her ear infections were caused from dairy I didn't think it bothered her at all. I will post about this this week, but the past two weeks my daughter was spilling protein and is now down to negative ( with no meds). How old is your son and how are things going so far?
    Thanks! Meredith