Ethan was diagnosed at age 8, just a few weeks after his little brother was born. We were in a bit of a sleep-deprived blur, so we didn’t notice Ethan’s edema at first. We had never heard of Nephrotic Syndrome and were lucky that our GP referred us to a nephrologist right away. The next year was full of relapses for Ethan. and he was labeled steroid dependent. We tried diet changes, high dose turmeric and other natural supplements, acupuncture, etc., before accepting the reality that he needed to go on a second line drug. He was on Cyclosporin for two years with great results.
Since then, things have been rocky. He stopped responding to Cyclosporin, MMF didn’t work, and now Tacrolimus is also not working. His next step will be Rituximab — hoping he can finally get a good stint med-free!
It’s definitely a scary roller coaster to be on and watch your child suffer all of the side effects. You are your child’s best advocate. I come to doctor’s appointments with a notebook (well, now I’m on notebook #3!) of his bloodwork results, medication doses, questions, etc. Never be afraid to ask too many questions. My final advice would be to connect with other parents and families going through this. They are an amazing support system!