Nephrotic Syndrome

[Jesstwins]

Hello,

I am after any advice from follow parents with children of Nephrotic Syndrome. My son was diagnosed last Nov & has recently finished his second dose of steroids for his first relapse which was sadly only 4 weeks after completely the first lot!

I am at my wits end and sick to my stomach with worry, he has currently got yet another cough/cold and his protein is up to 2+, can anyone share any light if this is common for it to increase when your child is poorly?

Hey.
Sorry I can't give u any answer. But I am. Going thru something similar.
My son has had glomerulonephritis and had gross Hematuria, and protienuria and high blood pressure. It has only just this week starting clear from His urine.
Tomorrow we have an app with the nephrologist. Hoping to get some answers as to what triggered it off. Like u, I am worried sick.
Has your son got high blood pressure? From what I can gather, the high BP is the most worrying thing about the leaking protien.
How did they diagnose? Thru ultra sound?

My son hasn't relapsed but he hasn't had any period of no protien since October.

Our protien levels were over the +++ and just come down to +. But still ++ blood.

Do you have a nephrologist?

X

Also, did he have full. Blood counts done?

Hi,

I hope your son is doing well, it’s positive to hear that his levels have come down this week. Does he take treatment currently?

I’m very new to this, and I’m finding it incredibly stressful and worrying. My son does have a good nephrologist, he has had blood work done when he was first diagnosed. So far his BP has been stable, on the higher side usually around 113/60.

He is sadly measuring +++ today so I think we’re heading for another relapse x

It really is the worst.
I felt so sorry for him going to school with bright red urine. Poor boy.
Yeah, you def need to get in touch with them.
Have they mentioned doing a kidney biopsy?
I have a feeling they might tell. Me they Re doing one for my son.
I just want to understand the cause of the flares. That way a treatment plan can be put in place. Protect his organs.
He is just on blood pressure medicine now. As his was very high. His is about 118 at the mo so I'm.not convinced it is controlled. X

I would request an immunology blood panel done. As it may sued some. Light on way its happening xx

Hello, not a parent of a child with it but I have nephrotic syndrome. I had multiple relapses as I am steroid dependent but have achieved remission for the last few years using a second line drug. Are you a member of the Nephrotic syndrome boards on Facebook? We’re a friendly bunch and look out for each other.

And yes, in answer to your original question, a cold would often set a relapse off for me. I also used to suffer from tonsillitis a lot until Ihad my tonsils removed six years ago and a relapse would inevitably accompany every bout of illness.