Hi my daughter was diagnosed with NS when she was 15 months old, we were told it was caused by a throat(streptococcal infection). She was diagnosed as minimal change and was a frequent relapser until age 10, then she seemed to come through it, then aged 17 she developed other symptoms, inter cranial hypertension, epilepsy and has relapsed 3 times in last 3 years. Then 3 weeks ago she had a massive stroke, we are now being told this is related to the nephrotic syndrome as it causes blood clotting, has anyone any experience if this?
I'm sorry to hear. My father has NS and has also suffered a massive stroke. I wasn't told it was because if the NS however I'm going to ask tomorrow if perhaps this is the cause.
I am so sorry to hear of this problem with your daughter. My grandson, aged 19 has suffered from NS since he as a a baby. He has had continual relapses since then, but your message has left me terrified he will now have a stroke. This danger has never been mentioned to us. How common is this? He is in remission at the moment and reducing steroids, so like every time, we hope this will be the last one. We were told initially he would grow out of it but this has not happened. Now the worry about strokes!
Hi, I realise your post was a long time ago, however I just stumbled across it and thought I would reply. I am so sorry that this awful event has happened to your daughter. In 2013 just before her 12th birthday my daughter also had a massive stroke due to neuphrotic syndrome. She was diagnosed at age 5 and was a frequent relapser before the stroke. I was never informed that there was a risk of stroke or thrombosis with neuphrotic syndrome and can't help but feel that this knowledge may have altered things. I have also read that asprin or other medications to prevent blood clots are given during relapse as policy by some clinics. I think all parents and patients with neuphrotic syndrome should be told about the risks to help prevent this from happening. I never could have imagined that neurphotic sydnrome would cause such devastation to my daughter and my family's lives.