Guest guest Posted March 1, 2012 Report Share Posted March 1, 2012 Tristen, 7 was on subq for 3 years. She seemed to be doing better so we decided to trial her off infusions. It's been 7 months and at first she was ok, got mild sinus infections once a month, but now she's had more serious sinus infections/bronchitis. The last 2 times she was off antibiotics for a week and was sick again. (I'm trying to decide if she's failing the trial off or if it's more to do with it being winter that she's sick more.) Her immuno and pedi aren't convinced the infusions worked the first time around and aren't sure she should go back on them. They both said it was my decision and I feel infusions are the route to go, but I'm having a hard time making that decision on my own without the backup of the dr's. Part of the issue is her IgG is within normal range, but on the low side, mid 600's. That's what her numbers were before we started infusions and that's what they are again after 6 months off infusions. I did see a 2nd immuno at Stanford who was the one who said let's trial her off and her local immuno agreed. I think it may be time to go back to the Stanford immuno and get her opinion and maybe she will be the one to support my decision. I wish this was easier! How do you know when you've failed your trial off? Just for reference: How often do your kids get sick while on treatment? Tristen was still getting sinus/lung infections but they weren't so severe and usually 1 round of antibiotics would clear it up. Thanks, le Quote Link to comment Share on other sites More sharing options...
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