c3 7 year old

[Lb34]

Hi, my son is 7 and in the middle of being diagnosed with c3 just waiting on final biopsy results but hospital is starting him on MMF next week. He has really high protein in urine and albumin levels 23! He is currently on a high does of steroids (has been for 3 weeks) this all started back in April when I noticed his urine was a strange colour, luckily no other symptoms just some swelling since being on the steroids. They were treating him before the biopsy for post infection glomerulonephritis. Not really sure why I’m writing on here but just wondering if anyone is in a similar situation?

[Lb34]

Hi, thank you so much for your reply! What hospital is he under? My son is under the Evelina/st Thomas in London. He has had high protein/blood in his urine for a few months and no meds would get this down, he has an ultra sounds & a biopsy. We are still waiting for part the results but they keep talking about c3 and they are going down that route with starting him on MMR next week. He is on strong steroids at the moment but they don’t seem to be working. Quite worrying really not much info around etc.

[BernardoEscobar in reply to Lb34]

Hi, I see that no one has responded to this post in 2 years. How is your son doing? My daughter is now 22 years old and also started with C3G kidney disease when she was around 8-9 years old. She has only been on medication and has also taken corticosteroids, up to 80mg. She is very healthy but under medical supervision. She just found out that her kidney function is at 30%, and she will need to have both kidneys removed in about two years. Now, it’s just a waiting game. I hope everything is well with your son.”

[Lualfa5 in reply to BernardoEscobar]

I'm suddenly getting emails from Health Unlocked & I'm not sure why since it seems this site has been inactive for over a year. Hopefully they are trying to resurrect it ~ we could sure use the support as well as share valuable info.