momma2sethandjiji Posted November 14, 2012 Report Share Posted November 14, 2012 (edited) Well, here I am again. I am glad I journal all of this, or I would confuse myself. A review - 7 yo ds, Seth, was diagnosed by Dr. K with PANDAS about a month ago. He recommended 14 days of Aug and a 5 day steroid burst starting the 8th day. I had posted about Seth having an exacerbation on the second day of Augmentin. He seemed to improve some from that about the sixth day in. Then, we started the burst, and again he got worse again with only repeat whispering. We saw zero signs of improvement following steroids. He basically remained "baseline" worse throughout the course of the meds. We started the 14 day observation last Friday. Until yesterday after picking him up from school, he remained worse than before starting the meds including some new extreme behavior at his sister's birthday party. Yesterday, he still had some of the repeat whispering but nothing like since the exacerbation and perhaps even a little less than before beginning the meds. He was much better than from just that morning. Same today thus far. That would be five days past the last day of Augmentin and seven days past the last day of steroids. Is it possible that the meds are just now taking effect? Thank you all again so much. Our problems are nowhere near as extreme as some of these clinical cases I have read, but man this whole process can leave the parents feeling so alone especially when you are miles and miles from a knowledgeable physician. Edited November 14, 2012 by momma2sethandjiji Link to comment Share on other sites More sharing options...
Fixit Posted November 14, 2012 Report Share Posted November 14, 2012 Well, here I am again. I am glad I journal all of this, or I would confuse myself. A review - 7 yo ds, Seth, was diagnosed by Dr. K with PANDAS about a month ago. He recommended 14 days of Aug and a 5 day steroid burst starting the 8th day. I had posted about Seth having an exacerbation on the second day of Augmentin. He seemed to improve some from that about the sixth day in. Then, we started the burst, and again he got worse again with only repeat whispering. We saw zero signs of improvement following steroids. He basically remained "baseline" worse throughout the course of the meds. We started the 14 day observation last Friday. Until yesterday after picking him up from school, he remained worse than before starting the meds including some new extreme behavior at his sister's birthday party. Yesterday, he still had some of the repeat whispering but nothing like since the exacerbation and perhaps even a little less than before beginning the meds. He was much better than from just that morning. Same today thus far. That would be five days past the last day of Augmentin and seven days past the last day of steroids. Is it possible that the meds are just now taking effect? Thank you all again so much. Our problems are nowhere near as extreme as some of these clinical cases I have read, but man this whole process can leave the parents feeling so alone especially when you are miles and miles from a knowledgeable physician. Could be either. Or both. Maybe saturations point has been attiained with abx to fight infection and/or/antinflammatory response. I have had that happen with just abx and happen with just steroids. Link to comment Share on other sites More sharing options...
michiganpandas Posted November 16, 2012 Report Share Posted November 16, 2012 we had our great days start about 3 days after the steroid burst.....had 2 great days....then 1 bad day again....then a stable month of good....tics even went away for a month, too. We are seeing a slight decline again, but still better than before the burst. Link to comment Share on other sites More sharing options...
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