lynn Posted September 9, 2012 Report Share Posted September 9, 2012 DS is 16 now and has had PANS like symptoms since he was 6. We have tried all of the treatments, including antibiotics (helped a bit), steroids (not helpful), 2 rounds of IVIG (made things worse), and many many supplements and OTC stuff. Things got much worse last year, with aggression and rage and total inability to deal with school. We tried going to USF for the CBT intensive, but things were just too out of control to get anywhere. Then last summer, several things happened. 1. We tried a trial of minocycline for a month. 2. He went to camp and had an extremely positive experience with very supportive friends. 3. We tried high doses of olive leaf extract as an antiviral and digestive enzymes to help his gut. I don't mean to say he is 100 percent now, but maybe 60, and we haven't seen that in a long time. He still gets angry, but you can actually see him (mostly) control it. So what happened? He had a pretty tough patch when he got home from camp, so we thought the mini wasn't helpful, but now I wonder. Link to comment Share on other sites More sharing options...
PowPow Posted September 9, 2012 Report Share Posted September 9, 2012 I will not ask about puberty ( as he is most likely quite past that) but do you think maturity helped him cope with his symptoms? How long ago were the IVIG infusions and how far apart were they? Glad he is a bit better. Are things in control enough that you could retry ERP? I would not discount the positive/supportive environment of good friends. Was it an OCD type camp or just spending time around great people? Link to comment Share on other sites More sharing options...
peglem Posted September 9, 2012 Report Share Posted September 9, 2012 (edited) Is it possible that he may have experimented w/ "stuff" at camp. There's actually quite a bit of anecdotal evidence that a certain "hippy" substance can help with those kinds of symptoms. See here: http://www.latitudes.org/forums/index.php?showtopic=9184&st=0&p=76744&hl=marijuana&fromsearch=1entry76744 Edited September 9, 2012 by peglem Link to comment Share on other sites More sharing options...
lynn Posted September 9, 2012 Author Report Share Posted September 9, 2012 Yeah, the puberty ship sailed a while ago-he has been 6'2" for a few years. There may be something in the "greater maturity" angle, too. He also has gotten into the Weill-Cornell clinic where they get therapy from residents under supervision from the 350 an hour folks but actually take insurance. His current therapist seems quite good, although totally doesn't get PANS. And the camp was one of the academically gifted ones but it was quite small and somehow for the last 2 years they construed themselves as a bunch of bright misfits. This worked well for my extremely quirky son. But still, he has had good therapy, supportive people before, but has been too in the grip of the ocd bullies to do anything with them. Like in the Narnia books, first there had to be a thawing. That's what I want to know about, because when it all goes to ###### in a handbasket again, I want to do this again, whatever it was... Just to answer the other question, the two ivigs were about 2 years ago, 6 months apart. Link to comment Share on other sites More sharing options...
lynn Posted September 9, 2012 Author Report Share Posted September 9, 2012 Oh Peg that is entertaining! I don't think so though. He is actually quite picky about what he puts into his body and is quite wary of drugs, both legal and not. Link to comment Share on other sites More sharing options...
lynn Posted September 9, 2012 Author Report Share Posted September 9, 2012 (edited) Sorry, double post Edited September 9, 2012 by lynn Link to comment Share on other sites More sharing options...
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