Grand news, great story, Erica. You are to be congratulated for your perseverance. Also for your courage in standing up to the nephrologist. My organization, which deals with a similar kidney disease, IgA Nephropathy (like HSP minus the purpura), no longer recommends biopsies for children. The rate of complications is too high (about 30%), the chances of obtaining adequate tissue samples too low. Besides, confirming the diagnosis doesn't change the nature of treatment recommended, and prednisone, as you know, is no cure.
Peace,
Dale
[SPAM?] Another update on my daughter's HSP - LONG
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McPhee Family
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Re: [SPAM?] Another update on my daughter's HSP - LONG
Dale,
Thank you so much for posting this! This has brought me such peace to know that information.
And yes, I felt the same way - why do the biopsy just to confirm the diagnosis if it doesn't change the treatment! We were told it was to confirm the diagnosis and to look for kidney damage which if there was any, they couldn't do anything about! So...why do the biopsy?!
To me it was nonsense as she said she was a "responsible" doctor and would not prescribe steroids unless she knew the diagnosis. Ha! Five doctors tried to cram steroids into her while she was hospitalized with no diagnosis based on the "maybe it will help" hypothesis!
Thank you for sharing! Delainey continues to read zero protein and her blood has come down more as well.
Truly,
Erica
Thank you so much for posting this! This has brought me such peace to know that information.
And yes, I felt the same way - why do the biopsy just to confirm the diagnosis if it doesn't change the treatment! We were told it was to confirm the diagnosis and to look for kidney damage which if there was any, they couldn't do anything about! So...why do the biopsy?!To me it was nonsense as she said she was a "responsible" doctor and would not prescribe steroids unless she knew the diagnosis. Ha! Five doctors tried to cram steroids into her while she was hospitalized with no diagnosis based on the "maybe it will help" hypothesis!
Thank you for sharing! Delainey continues to read zero protein and her blood has come down more as well.
Truly,
Erica