mater
10-26-2016, 02:13 PM
About 12 months ago my 15 year old daughter began having headaches and minor cold symptoms that didn't go away. She was treated with several antibiotics for sinus infection and then a 6 day course of prednisone. That doctor also got lab work for things I didn’t know about including ANCA. The day after the prednisone stopped she started feeling worse, not in the sinuses but nausea and just not wanting to eat or do anything. It was a few days before Christmas and I just didn’t know enough to try to push past nurses(“lot of flu going around”) and get to the doctors. Two days after Christmas she had some pain in her lower inside rib area. Saw our pediatrician who ordered a chest x-ray and made an appt for her the next day at a Children’s hospital in a near by town. That evening he called to tell me that her ANCA(finally in after 2 weeks) was high and the chest xray showed signs of a vasculitis. The next day we saw a pediatric rheumatologist who diagnosed her and admitted her to the children’s hospital and then realized that her kidney function was low (had been fine 2 weeks before).
Things kicked into high gear after the kidney biopsy showed that 90% of the filtering units were blocked. They threw “everything and the kitchen sink at her” and her kidney lab work got worse each day for 7 days(acute kidney failure). She had 7 pheresis treatments, methelpred then 60 mg prednisone, and did 2 days of dialysis. Then her lab work started improving. At day 13 they gave cytoxan and rituximab the next day and sent her home at day 17. She had Cytoxan once a month for 3 months after that. Now she is almost off of prednisone and still has rituximab (2 times 2 weeks apart) every 6 months. Her B cells are staying at zero and there is no sign of active disease. Her hemoglobin is up in the 12 range after a low of 6.6. All other labs are now normal except for protein in her urine; a lingering effect of the kidney failure. She is on an ACE inhibitor for that. They did NOT expect her kidneys to regain anywhere near as much function as they have. We are grateful and give glory to Jesus Christ for sustaining us and healing her.
I avoided forums at first because there was nothing I could do and hearing about other bad stories was not what I needed. Now though, I am seeking support to know what to expect, to hear the experience of others about how to know when the disease is becoming active even when labs are normal.
Understandably, my daughter is working through fears when she has a cold or any little thing that seems amiss. She is currently 1 month after the last lab and they don’t plan to draw any more until late December. They will see her for infusions in January.
I would love to hear that some people don't have the disease reactivate for a long time, but people with that experience probably aren't on the forums. I hope they are out there somewhere, though.
Thanks for reading
Things kicked into high gear after the kidney biopsy showed that 90% of the filtering units were blocked. They threw “everything and the kitchen sink at her” and her kidney lab work got worse each day for 7 days(acute kidney failure). She had 7 pheresis treatments, methelpred then 60 mg prednisone, and did 2 days of dialysis. Then her lab work started improving. At day 13 they gave cytoxan and rituximab the next day and sent her home at day 17. She had Cytoxan once a month for 3 months after that. Now she is almost off of prednisone and still has rituximab (2 times 2 weeks apart) every 6 months. Her B cells are staying at zero and there is no sign of active disease. Her hemoglobin is up in the 12 range after a low of 6.6. All other labs are now normal except for protein in her urine; a lingering effect of the kidney failure. She is on an ACE inhibitor for that. They did NOT expect her kidneys to regain anywhere near as much function as they have. We are grateful and give glory to Jesus Christ for sustaining us and healing her.
I avoided forums at first because there was nothing I could do and hearing about other bad stories was not what I needed. Now though, I am seeking support to know what to expect, to hear the experience of others about how to know when the disease is becoming active even when labs are normal.
Understandably, my daughter is working through fears when she has a cold or any little thing that seems amiss. She is currently 1 month after the last lab and they don’t plan to draw any more until late December. They will see her for infusions in January.
I would love to hear that some people don't have the disease reactivate for a long time, but people with that experience probably aren't on the forums. I hope they are out there somewhere, though.
Thanks for reading