beeskneesmommy Posted May 24, 2013 Report Share Posted May 24, 2013 Hi - DS6 just had IVig a few days ago. He has been doing very well except for flares during exposure. This 2nd IVig was to try to take care of the flares. Otherwise, he has progressed very well since the 1st IVig last Sept. The doc wants to have him take a run of 30 days Clyndo and 14 days Rifampin, together. She wants us to start it now in roder to "blow out any residual Strep that might be left". His titres have been elevated, but not too bad: Anti-DNase 355 and ASO now normal this time, but both or at least 1 are generally elevated to a minor degree at various blood draws every 3 months. Nothing blaring. His other doc, an immunologist, feels that this abx therapy is unnecessary and says that if he had an active infection we would know about it because he wouldn't be doing so much better. DS is currently on a combo of Augmentin and Azith daily, has been for 2 years, and we know he can tolerate abx pretty well. I am just not convinced that these big gun abx are safe - just do not know a lot about them. Any thoughts, advice? Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted May 24, 2013 Report Share Posted May 24, 2013 Out of curiosity, why do you think they aren't safe? My son did two weeks clindimycin, 1 week rifampin Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 24, 2013 Author Report Share Posted May 24, 2013 (edited) Well, it was about 5AM post IVig that I wrote that....'safe' may not have been the correct word. I am a big beliver in abx for PANDAS but my son has had some yeast overgrowth as a result of long term abx. I have also seen posts that these meds hav resulted in increased aggitation for some kiddos. Just want some feedback prior to going ahead with it, as his immunologist disagrees with his neurologist regarding the necesity of this particular run of meds. How did your son tolerate the run of Clyndo/Rifampin, and did he take them at the same time? Edited May 24, 2013 by Beeskneesmommy Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted May 24, 2013 Report Share Posted May 24, 2013 Hi tolerated it fine -- how do you know he has a yeast outgrowth? He did not take a same time -- first the clindimyncin, then the rizfampin. Link to comment Share on other sites More sharing options...
LNN Posted May 24, 2013 Report Share Posted May 24, 2013 We've never used clindamycin but DS was on rifampin for a year as part of his lyme treatment (in combo with zith and sometimes augmentin). We never had any issues with yeast or any other issue. It does turn your urine orange when you first start, but that goes away. It's best absorbed on an empty stomach. Link to comment Share on other sites More sharing options...
Hopeny Posted May 24, 2013 Report Share Posted May 24, 2013 BKmommy I was (maybe still am) extremely nervous about using Rifampin, but at the same time decided to plow through it. DD9 has been on since November, first on a low dose 75MG 2x/day and for the past month 150 MG 2x/day. Her neutrophil and wbc are borderline since using. we monitor fairly frequently (bi weekly/monthly depending on my stress level:) ) and have kept her on milk thistle, so far her liver enzymes have been fine. Her ASO has gone from 200 to 75 (normal under 150) !!! This is the only thing so far that seems to have tackled the strep. I had to take DD3 for a cardiac echo for a crazy reaction to Bactrim. FWIW while there the cardiologist told me that she does not like Bactrim at all and wished doctors would stop prescribing it because so many people react to it. I then asked what she thought of Rifampin and she said its an old med and perfectly fine in her opinion. I am however very careful about trying to minimize any possible exposure to tuberculosis while she is on Rifampin. DD has been in NYC once since she started it and we whooshed her into and out of the American Girl store, as I know there is quite a bit of TB within the homeless population in NYC, we did not walk around. We also have not flown anywhere to try to limit exposure to too many adults. DH works in a hospital but I would not let him take her there for take your kid to work day etc. Based on our stellar result with ASO it seems to really get rid of the strep. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 24, 2013 Author Report Share Posted May 24, 2013 I had a suspicion of yeast because infection was cleared for the most part and there were still flares (more minor) after 1 IVig last Sept. We started Diflucan and DS6 became stellar, practically completely asymptomatic for months. Easy blood test showed elevated Candida, which the Diflucan was managing and eradicating well. After use of Diflucan for several months, DS looked great. Due to some very minor flares when exposed to Strep and a minor breathy exhale tic that still emerges occasionally, we decided to do 1 more IVig to attempt to knock the last of the symptoms out. The plan for Clyndo (just 30 days) and Rifampin (just 14 days) simultaneously has been put in place to "blow out any residual Strep". The doc wants to do this in order to get DS set up to start decreasing abx over the summer. He is currently on Augmentin BID and Azith, daily, and has been on this combo or 2 years. The Augemntin will have to come off for the Clyndo/Rifampin combo, and the Azith will stay on board. We may decrease the Azith over time but my hope is that we keep it on at least 1-3 x per week indefinitely until he is 21. powerofprayer 1 Link to comment Share on other sites More sharing options...
cobbiemommy Posted May 24, 2013 Report Share Posted May 24, 2013 My DS did wonderful after IVIg, but still had infection. I would tend to believe the first doc who wants to make sure all infection is gone. Rifampin is an old med and has a good safety record, but I would discuss any concerns you have with the doctors involved. Link to comment Share on other sites More sharing options...
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