hi
im mum to a brave wee soldier William age 5 diagnosed just over 2 years C3g a lot has happened in those long 2 years we spent a year very unwell very swollen and receiving lots of medication to reduce protein leak requiring 4 days a week albumin infusions ...we tried steroids ,mmf,plasma,enalparil,eculizamab nothing worked and in June 2017 we made the decision with the doctors to remove 1 kidney to try and half the amount of protein he was loseing.....thakfully the plan worked and has given us a good year we are not receiving infusions altho albumin is still in the low 20,s we have no swelling .....we will never hit remission and our normal urine protein is +3 -+4 daily we have given up on immunosuppression as nothing has or will work so now we just wait for the other kidney to fail ..thankfully almost a year since removing one the other is still holding on well and long may it last xx
