My son got diagnosed with Nephrotic syndrome

Kidney and urinary tract
1

Could anyone help me! My 8 year old got diagnosed with Nephrotic syndrome is on 15 ml of steroids twice a day for 7 weeks now and no change! I am so scared for him. I hate that he swells and doesn't look the same. My poor baby, I am so afraid that he will get bullied in school. Please let me know what has worked for you or anyone that you know

2

Hi Crystal-- this is a pretty low dose from what I took as a child.  But also this is a slow process-- both in how it affects the body and how it fixes the body.  They will probably wait a couple more weeks to see if they want to up the dose of prednisone.  The higher the dose- the longer it will take to ween him off.  I remember one of my bouts that I think I was on up to 80mg of prednisone.  I got better in just a couple of months- but then it took another 6 months to ween myself off....  Just be patient.    Also- for this age group-- he should be okay in school..  I had relapse at age 5, 6, 7, 14, and 15.  I didn't start to get made fun of until the last bout at 15- which was harder as a girl I think.  Just know that it isn't his fault- and his true friends should know and help protect him against the bullies who don't know any better!  It will make him a better man later- and hopefully give him great compassion for others who are suffering from illnesses...

 

3

I also had NS. Diagnosed young, around 8 years old kept relapsing on prednisone. It's a slow process took me 8 years to conquer this disease cyclosporine is what finally worked for me

4

Hey Crystal, I would advice to probably read previous article and journal published. From what I remember I think kids have higher doses in other contries and seemed to worked. One thing that is crucial to prevent relasps is to reduce the doses very very gradually, to a point where the person gets to 5mg every two days and then 2.5mg every two days. Am not a GP myself but from what I have read in articles and my experience of having it as well, its worth check studies on it as there are couple really good ones on kids and shows the results and what worked.