Fixit Posted November 26, 2010 Report Share Posted November 26, 2010 In September Allie began another PANDAS episode- you may recall, I had great difficulty finally getting the rifampin/augmentin treatment that has worked so well to bring her back in the past. We did finally get that treatment at the end of October/beginning of Nov. She improved a little on that but was still having a pretty rough time. Last Friday, we did IVIG a week early because we were planning on being out of town this week (trip was canceled so not doing that now). She seemed a little better on Saturday, even a little more better (ach! listen to my bad grammar!) on Sunday (only one short episode of fixation w/ SIB & aggression). Today after school I'm seeing her revert back to some prior obsessions (spinning things), but not with the intensity we saw previously and no SIBs or aggression w/ it. Communication is returning as well. Could we really, finally be on the mend? I'm daring to hope that's the case and this is not just a "good blip." She's also reverting back to some old videos that she used to obsess over- but again the intensity of it is reduced from the most recent ones (Dionne Warwick's Walk on By). She's laughing and happy right now- that magic laughter, not the manic kind. Peglem....so awesome.... I've only read your posts on this thread!!!! Do you think it was because you did it a week early!??!?!?!. And you are indeed a very good MOM!!! Link to comment Share on other sites More sharing options...
peglem Posted November 26, 2010 Author Report Share Posted November 26, 2010 In September Allie began another PANDAS episode- you may recall, I had great difficulty finally getting the rifampin/augmentin treatment that has worked so well to bring her back in the past. We did finally get that treatment at the end of October/beginning of Nov. She improved a little on that but was still having a pretty rough time. Last Friday, we did IVIG a week early because we were planning on being out of town this week (trip was canceled so not doing that now). She seemed a little better on Saturday, even a little more better (ach! listen to my bad grammar!) on Sunday (only one short episode of fixation w/ SIB & aggression). Today after school I'm seeing her revert back to some prior obsessions (spinning things), but not with the intensity we saw previously and no SIBs or aggression w/ it. Communication is returning as well. Could we really, finally be on the mend? I'm daring to hope that's the case and this is not just a "good blip." She's also reverting back to some old videos that she used to obsess over- but again the intensity of it is reduced from the most recent ones (Dionne Warwick's Walk on By). She's laughing and happy right now- that magic laughter, not the manic kind. Peglem....so awesome.... I've only read your posts on this thread!!!! Do you think it was because you did it a week early!??!?!?!. And you are indeed a very good MOM!!! I don't know, but I'm going to do the next one at 4 weeks again- and decide when I see how that goes, if I should ask the immuno to up the frequency. Frankly, though I know she needs them, those IVIGs are getting a bit tiresome. If she holds steady doing them every 4 weeks, that's often enough for my tastes. Link to comment Share on other sites More sharing options...
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