Iowadawn Posted January 6, 2012 Report Share Posted January 6, 2012 Hi all. Just passing this along that Swedo & company will be at the PAS conference in May 2012 in effort to have the 500 docs (pediatricians)help define/help come up with better dx criteria for PANS. You can google the site and also find the "formal" purpose, and who will be there presenting all laid out on a separate page . Maybe someone can put up the links---I'll self destruct trying!!! Personally, I think the whole "CANS" think is a bunch of trash and a cover---"See, see, everyone....PANS, CANS,.. we never have been that far apart...OK, We can believe in PANS." I'll refrain from further comment!! Errr! Dawn Link to comment Share on other sites More sharing options...
thereishope Posted January 6, 2012 Report Share Posted January 6, 2012 (edited) . Edited September 30, 2019 by Vickie Link to comment Share on other sites More sharing options...
LNN Posted January 6, 2012 Report Share Posted January 6, 2012 Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. Funny, in this context, a group of researchers suggesting a new name that addresses treatment based on symptoms over etiology has an entirely different meaning than a very similar choice of words from Singer/Kurlan. Let's hope this conference brings real change. Link to comment Share on other sites More sharing options...
dcmom Posted January 6, 2012 Report Share Posted January 6, 2012 To me this sounds good. Sounds like they are saying lets not worry about etiology (which can be hard to find) but lets focus on treatment! Since these docs are also engaged in an IVIG study, I am thinking their "treatment" will include MORE than SSRI's. When and where is this, and is anyone going???? I want to hear all about it!!! Link to comment Share on other sites More sharing options...
thereishope Posted January 6, 2012 Report Share Posted January 6, 2012 (edited) . Edited September 30, 2019 by Vickie Link to comment Share on other sites More sharing options...
T_Mom Posted January 6, 2012 Report Share Posted January 6, 2012 Now THIS IS good news indeed!!! Thank you Dr.s Swedo, Cunningham, Leckman, and Hornig! --from the bottom of my heart. Link to comment Share on other sites More sharing options...
kimballot Posted January 7, 2012 Report Share Posted January 7, 2012 YAY!! It is REAL!! It is coming!! Yay!! Link to comment Share on other sites More sharing options...
tpotter Posted January 7, 2012 Report Share Posted January 7, 2012 To me this sounds good. Sounds like they are saying lets not worry about etiology (which can be hard to find) but lets focus on treatment! Since these docs are also engaged in an IVIG study, I am thinking their "treatment" will include MORE than SSRI's. When and where is this, and is anyone going???? I want to hear all about it!!! I wonder if this is going to be the springboard for results from the IVIG study? I know they haven't put enough kids into the study yet, BUT....there are times when studies are ended early because the results are so overwhelming! BTW, I'm just hypothesizing (with a bit of hopefulness.) Wouldn't that just be great if in one year, we could get the White Paper, the NIMH to change their website, and the 2nd IVIG study (I know none have happened yet, but I am having one of those feelings that maybe it could really happy!) Link to comment Share on other sites More sharing options...
colleendonny Posted January 8, 2012 Report Share Posted January 8, 2012 Is anyone allowed to go to this meeting? I live in the area and would love to attend. Link to comment Share on other sites More sharing options...
Iowadawn Posted January 8, 2012 Author Report Share Posted January 8, 2012 They now have the entire extensive program for the meeting available online. It appears that the average Joe is not able to attend unless you were to go as a guest. Costs a pretty penny, too!! Dawn Link to comment Share on other sites More sharing options...
bulldog24 Posted January 8, 2012 Report Share Posted January 8, 2012 my child is in the study and yes i was told that after 16 kids they will look at the data and if its overwhelmingly convincing, they will end the study early. they will at least put out interim report at 16. I think they only need 2-3 kids to meet 16 Link to comment Share on other sites More sharing options...
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