Thank you for visiting and if you feel so inclined to donate, thank you for that as well.
We do this walk and spread awareness for our five year old daughter. She was diagnosed with NS in November of 2019. After multiple ear infections and her body swelling she one night was beyond exhausted and throwing up. By the next morning she was super swollen and her stomach was sticking out. Hospital visit and after many tests she was diagnosed with nephrotic syndrome and we spent four days in the hospital on different meds to bring her edema down. Fast forwArd to February and after many remissions and ultimately a final relapse she was not responding to the high dose of steroids. By now she is complaining of severe stomach pain and begins throwing up bad after Lasik and diuretic at home. Hospital again for a week stay this time , which was followed by a kidney biopsy and a endoscopy of her stomach . With those tests it was determined she has minimal change disease and ulcers. Which even with her antacids and steroids her stomach was bad and her body was no absorbing her meds there for spilling protein and high doses. She was then put on stomach coating meds and FINALLY after so much pain and edema her body was responding. We are now in May (scary virus time) and she has been in remission for almost two months. We have slowly started tapering her each week a bit more. Her body seems to be responding. We went from 13ml of steroids daily to 3.5 right now and her kidneys seem to be doing good and her body is starting to create its own steroids as we lower the dose. Hoping by the end of June she will be med free , building a immune system and gaining her energy back. As well as loosing some of that steroid weight . Will update In a few months.
Thank you for reading , and donating to help find a cure for so many children who suffer this rare disease.