oivay

My now 13 year old daughter is now pretty much normal. It was sheer ###### for almost 2 years though, but the PEx made a world of difference for her. Her grades never came back up to what they were though, but I think that's because she has become almost hypersocial lately, especially since she started middle school. I think this is because she missed so much school and social activities/sports, etc. Also, she spent most of last year "catching up". Her school nurse told her that they had actually considered holding her back in 6th grade because she had missed so much school (about 60 days), but didn't because she was in the gifted program and they thought she would catch up, which she did. I probably should be more vigilant about monitoring her academics, but at this point I'm so glad she hasn't had an episode in a while, I've become far less diligent.

We had very good results from PEX, which we did through Dr. Elia at CHOP about 2 years ago. We also used Dr. T. You could absolutely see a difference by the 2nd treatment. (She was diagnosed with both Pandas and Sydenham's chorea, but the majority of her symptoms were debilitating chorea.) My daughter has been symptom free since, although she's still on abx, but it's getting to the point where she is refusing to take them due to gastro issues. We had tried pretty much everything before that, abx, steroids, all sorts of drugs, etc., and then tonsillectomies on both kids. We also did some physical therapy afterward as her leg had become kind of twisted from all the choreiform movements. I'd do it again in a second if we had to. It was covered by insurance (Cigna).

Just kind of tossing this out there.... My daughter got way worse on augmentin.....within about 12 hours her tongue started swelling, throat started to close. It turned out she was allergic to it. I don't think the augmentin actually made her worse, I just think it was completely ineffective, so things just kept progressing. She responded very well to zithromax, and then when that stopped working, prednisone burst and clindamycin, which worked very well the next two times. Biaxin/medrol combo gave her truly horrendous diarrhea, so we had to stop it within about two days. I've never seen this mentioned here, but she'd also had a history of cat scratch disease when she was much younger, which cleared up with a round of zithromax.

yes....oops!

My daughter was diagnosed with both Pandas and Sydenham's. (We used Dr. T, although she saw a few others too.) She had a fairly long history of documented strep infections (at least 2 years). Cunningham test showed Pandas, not Sydenham's, but almost all of her symptoms were chorea. I think the more educated doctors realize that at minimum there is so overlap between the two. She has been fine since Pex, almost two years ago, but still gets pretty severe headaches from time, which seems to be common for SC kids.

It is interesting how it happens about two weeks after they start school. Maybe it's just because they're all together and swapping germs in such a communal setting. I totally agree that the response would be different if they were all boys. Looks like Mechtler is on the case again and misdiagnosing.....

Mechtler really is a one-trick pony, isn't he? I'm honestly shocked that parents will still take their children to such an idiot. And that he gets paid for it.

It looks like things may be starting again upstate. My mom called me to tell me that apparently some more kids have been diagnosed with a "mysterious tic like illness" as it was on the news up there. It should be interesting.............