bigmighty Posted April 16, 2013 Report Share Posted April 16, 2013 A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset. ptcgirl, Missmom and Kathy4Him 3 Link to comment Share on other sites More sharing options...
beeskneesmommy Posted April 16, 2013 Report Share Posted April 16, 2013 So happy tp hear it! It has not been a "light switch" for us, but DS6 is almost fully recovered as well. Long journey but he now fluctuates betw. 95-100%, with occasional minor flares. Because of the flares, we are going to do 1 more IVig (he had 1 in Sept., 2012) and hope to say goodbye to the flares. We plan to get him off of most abx except an Azith prophalaxis over the summer. Life is very different for us now...happy. For those that are still struggling, I do know how dark some days can get. Recovery is absolutely possible! Link to comment Share on other sites More sharing options...
SurfMom Posted April 16, 2013 Report Share Posted April 16, 2013 That's great news, Bigmighty. Thank you for sharing! So happy for your son and your family! Link to comment Share on other sites More sharing options...
Kathy4Him Posted April 16, 2013 Report Share Posted April 16, 2013 Bigmighty... this is such good news!!!! what kind of treatment did you do for your son? Does he take anything now? Thanks. Link to comment Share on other sites More sharing options...
bigmighty Posted April 16, 2013 Author Report Share Posted April 16, 2013 DS did two IVIGs via NIH clinical trial. After the 2nd IVIG, he was at 90%. Sadly, got strep three weeks later and ended up with a much worse exacerbation. About six months later, we finally managed to get on Dr. B's calendar. Started Augmentin 875 2x daily. A month later, did a three-week steroid taper. It was two months after DS came off steroids that he went into remission. He is down to Augmentin 500 daily and soon will drop to Augmentin 250. He is straight PANDAS. No co-infections. No other triggers. Just strep. Link to comment Share on other sites More sharing options...
ptcgirl Posted April 17, 2013 Report Share Posted April 17, 2013 Such great news!!!! Thanks for sharing!!! Link to comment Share on other sites More sharing options...
Tattoomom Posted April 17, 2013 Report Share Posted April 17, 2013 Awesome news! My daughter just finished a 5 week steroid taper and is doing 95% better! *knock on wood* She takes daily Zithromax. Hoping we can one day say we are in remission. Link to comment Share on other sites More sharing options...
nicklemama Posted April 17, 2013 Report Share Posted April 17, 2013 Great news! We are still working toward that light switch. Link to comment Share on other sites More sharing options...
trggirl Posted April 17, 2013 Report Share Posted April 17, 2013 I love hearing good news like this!! For those of you that did the steroid taper, did your children have tics? Link to comment Share on other sites More sharing options...
bigmighty Posted April 19, 2013 Author Report Share Posted April 19, 2013 My son did not have tics prior to steroids or after. I have heard of situations in which tics got worse or remained the same after steroid tapers, but OCD improved. Link to comment Share on other sites More sharing options...
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