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
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mumtoawarrior
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Welcome mumtoawarrior, What a 2 year period your little man and your family have had.
Here's keeping everything crossed for a long lasting and strong kidney, he needs a break for him to develop and grow much much stronger & may this be long lasting. God bless. x
Hi Mumtoawarrior, Thank you very much for joining the community and sharing this very compelling story about your courageous son. I hope the we can be of help as your family's journey through C3G continues.
Oh mom, my heart and prayers are with you here in New York. Our son was just dx with C3G and possibly DDD. He is 10. His kidneys are healthy right now and is one an ACE inhibitor and Cellcept. I just wanted to let you know that we are thinking of you and that you are no t alone. He is a beautiful boy and I pray that you strength and much support from family and friends. xoxo Michele McGrade
Hi mom to a warrior, your son is precious and I can see he's in wonderful hands. I am happy that the current is currently plan is working. Sending lots of love and prayers for continual health. ❤️🙏🏼🙏🏼❤️
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