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re: Nephrotic syndrome, minimul change disease

re: Nephrotic syndrome, minimul change disease

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Posted by Terrisa on October 08, 2000 at 23:14:15:

Does anyone out there have a child with this disease
that seems to have relapse after relapse and nothing
seems to be helping? My 8 year old son has had this for a year and a half now and we can't seem to keep him in remision for more than a week or so at the most.
He has been on the steroids for about as long and went though the biopsy then was put on another med called cyclophosphamide. Which has side affects that seem worse than the disease itself. They include hair loss,
blood in the urine, possible bladder cancer in the future, and possible bone cancer in the future. Does anyone have any experience with this problem or this med? My son is only 8 and now weighs about 115 pounds and has stretch marks on his body from gaining so much from the disease and all the meds. Does anyone have any suggestions or ideas for me and my son? please respond!!!!!!!


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