deby Posted June 29, 2010 Report Share Posted June 29, 2010 My DS8 is on Azithromycin for 1 month, and we saw a great improvement, I can say he is 85%. But he is around 85% for 1 week, and I don't see that he continues to improve. For how long he should get the abs if we don't see real improvement anymore? Are there other alternatives other that IVIG? Link to comment Share on other sites More sharing options...
peglem Posted June 29, 2010 Report Share Posted June 29, 2010 We stay on abx because my daughter gets worse if we try to go off. Of course, you can't know if your child will get worse until you try....but I'd give it at least a month of stability before I'd try. When things are going good, I try not to change anything at all. Link to comment Share on other sites More sharing options...
EAMom Posted June 30, 2010 Report Share Posted June 30, 2010 I agree with Peglem. What I would recommend (after being stable for 1 mo.) is a trial of a lower dose (but still enough to prevent strep--not sure how much your dd is on or how big she is). When we've tried to lower the dose (after about a year on abs) we noticed an increase in symtpoms, so we went back up to our higher dose. Now that we've had our 2nd IVIG last month, IF things are really great for about 1 year, we'll consider trying a lower dose again. Then again, if you can't get close to 100% on abs alone, you might want to add on IVIG or plasmapheresis or a pred trial...or you also could try a different antibiotic (eg. try augmentin if you're currently on azith.) Link to comment Share on other sites More sharing options...
TessaKrista Posted July 6, 2010 Report Share Posted July 6, 2010 Hi Deby, My 7 year old son has been on azithromycin for 10 days now at full strength 7.5 ml, and one day at 3.5 ml. I was concerned about the side effects of taking full strength azithromycin for too long. Is you son on the maintenance dose now? Is it still 85% improvement? I too want to know whether or not we can do it without ivg, and just antibiotics. Link to comment Share on other sites More sharing options...
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