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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.

 

 

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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!

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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.

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