Patient Stories

Rheumatic Fever and glomerulnephritis

Posted In: Rare Disases Anonymous | August 29, 2014 | 03:40 AM

I am concerned my daughter had rheumatic fever two years ago and is not receiving prophylaxis. She is in first grade and I am always on edge. She had strep throat November that year and received antibiotic treatment. She did well for a month or so but then developed respiratory symptoms, palor, just didn't look well was given more antibiotic and child prednisone. In January she developed a rash that looked like scarlet fever and fever. My husband took her to dr and they said it looked like allergies. I knew she probably needed antibiotic so I took her back to doctor and asked them to swab her throat (daycare had large number of kids with strep too) and it was positive. They again put her on antibiotics. She seemed to recover from scarlet fever but soon developed another rash and fevers continued. I took her to the Er and they drew labs and let me go home. That very day she developed bloody urine (almost black). She was admitted with rash, nephrotic syndrome, arthralgias, elevated esr, crp, low complement (c3). We stayed there one week without diagnosis and doctors said it was not strep related. I couldn't believe (low titers was their reasoning) it was ruled out so quickly; she already had several rounds of antibiotic and corticosteroid. I had my daughter transferred to another hospital (she had received iv clindamycin before leaving at my request). At Musc her renal status was improving on it's own. Dermatologist biopsied skin and found it consistent with erythema marginatum. Again the doctors insisted rheumatic fever and glomerulnephritis did not occur at same time. She underwent renal biopsy for diagnostic purposes only (renal problem improved already). Biopsy showed pauci-immune glomerulnephritis anca negative with 20 % crescents. They pulsed her with prednisone and sent her home on oral prednisone. The doctors made me believe she had disease like wegner and so I watched her closely for any problems. Her abdomen became very large so I took her to local er who sent her back to Charleston. The renal laboratories looked same but they decided they should start cytoxan. With much hesitation, and all doctors telling me this is not from strep - we started treatment. She only continued to improve. I continued researching her condition and found more about rheumatic fever and renal biopsies. There are not large numbers of research articles out describing biopsies and necroposies but have found some that show many different lesions(renal) found during research. The term pauci-immune was first used describing renal lesions in rheumatic fever. I took her to Mayo clinic after three rounds of cytoxan and he thought that mmf would be more appropriate due to her renal status and spontaneous renal recovery. I have since learned about jone criteria and she definitely fits criteria 1 major 2 minor with orevious positive rapid strep. Rheumatologist has included this in diagnosis but did not start prophylaxis. I in turn keep rapid strep tests and check anytime there is an illness with fever. Luckily she has not had it since. She has also maintained kidney function with only trace protein and blood. In researching this I have found many different strains of strep can trigger illness and my rapid strep only detect strep a. I really get scared every year when school starts back because it's only a matter of time before she gets strep again. I really don't know what to do. There are no pediatric rheumatologist in my area and the one she sees doesn't seem to think it's not important.

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