Nephrotic syndrome

[Realdid]

Hi
My DD is 9 and this year been diagnosed with nephrotic syndrome. Has anyone else experience of this? Shes yet to go into remission after weeks of steroids and now moved to tacrolimus because I think she's steroid resistant. I'm going through hell and back in my head every day with what this means for her, I'm so scared to ask but Google also giving me so many scary stories and information.
Guess I'm just looking for some good news stories and to find any other families going through similar x

I know you posted several months ago but I’ve just read your post today. I hope your daughter is now in remission. My son is now 13 and was diagnosed at 4. We’ve had 9 years of steroids supported by first Levamisole, then Cyclophosphamide, then Tacrolimus. Tac worked best and he’s been on it for about 6/7 years. He’s had a wobbly couple of years and we tried MMF recently but that didn’t suit him at all. He’s had two infusions of Rituximab this summer and we’re now weaning off all his other medications. I’m hoping for a few months without drugs for him.

It’s a horrible condition, and so little is known about what causes it or how children will respond to different treatments. My son has been affected emotionally, physically and socially. He regularly has to miss school for appointments, and has had some extensive hospital stays.

But we still have hope that he’ll grow out of it at some stage. His biopsies don’t show any concerning scarring, so everything still points to minimal change disease. So although I can’t give you a complete good news story (I wish I could), things are looking up for us. Fingers crossed for you and your daughter too xxx