Nephrotic syndrome

[PercyPeanuts]

Does anyone have any experience of this? My child has just been diagnosed with this. I gather it is reasonably common but I had never heard of it.

They've prescribed steroids and antibiotics and will re-examine in a few days.

Thanks.

Sparkle, no side effects of levamisole so far although he does have blood tests as it can affect white blood cells...he has been on it the past year.
We were also told that an initial 6 month course of pred would help prevent relapses but actually what has worked best for us is having a very long weaning schedule but getting off high dose within a few weeks as he has really suffered from the physical and emotional side effects. In my experience a slow weaning down to 5mg over 4 months is the most effective way of trying to prevent future relapse but everyone is different. A pp has already mentioned it but the facebook groups are helpful too.

Hi all, just wondering how your children are doing? It's been a year since this thread started. My DD has had a few relapses since but she is doing ok on low dose pred.

Sorry to hear your DD is having relapses, have any second line medications been suggested?

My DD age 10 was only diagnosed at the end of April this year. She has been really emotional due to the prednisolone and we were all finding her behaviour really hard to cope with - also has ASD+ADHD which were all amplified due to prednisolone. She appears to be a frequent relapser, relapsed while on 60 mg of pred and then again while weaning. Now she’s on Tacrolimus and seems to be doing well!

Glad to hear your DD is doing well on tacrolimus, are there any side effects? Was she able to come off prednisolone with it yet? That must be difficult for your DD, my DD is also very emotional on steroids and she normally never is! Not to mention constant hunger and weight gain. I have a DS with ASD so I can imagine the how challenging things must be for your DD.

We have tried levamisole but she was experiencing discomfort in her legs so we were told to stop and may restart it again next month.

Thankfully she was able to come of the steroids completely with the tacrolimus. DD is really struggling to get to sleep, I thought it may get better when stopping the steroids but it hasn’t. DD is still awake after midnight so we may have to switch drugs.