T_Anna Posted January 3, 2013 Report Share Posted January 3, 2013 Just found out that the The American Association of Pediatrics' annual convention (October) will feature a daily discussion about controversies...including PANDAS. http://www.aapexperience.org/ "Join in the debate about the latest controversies in pediatrics at our new daily point-counterpoint sessions focusing on formula feeding to newborns, ADHD, cardiac screening for sports, and the PANDAS hypothesis." Maybe this will further help our kids. T.Anna DS 14.5 (dx November 2012) Link to comment Share on other sites More sharing options...
Missmom Posted January 3, 2013 Report Share Posted January 3, 2013 (edited) Hate to sound skeptical, but wonder who they are planning on having speak on behalf of pandas. Just by the way it is phrased as a pandas "hypothesis" scares me. It did not show a list of keynote speakers. If anyone hears any more on this please post. Edited January 3, 2013 by Missmom Link to comment Share on other sites More sharing options...
AmySLP Posted January 3, 2013 Report Share Posted January 3, 2013 Also concerned about this immediately being included in the controversy section of this conference. If a naysayer is the speaker, this could do a lot of harm rather than good. Link to comment Share on other sites More sharing options...
kimballot Posted January 4, 2013 Report Share Posted January 4, 2013 Interesting - we need to keep our eyes peeled! Link to comment Share on other sites More sharing options...
nicklemama Posted January 4, 2013 Report Share Posted January 4, 2013 Count me in as skeptical. It could do us more harm than good. Lets wait and see who is on the program. Link to comment Share on other sites More sharing options...
Kathy4Him Posted January 4, 2013 Report Share Posted January 4, 2013 It is also listed under the Neurology Topics for the conference. I say it is a good thing it is being discussed...may be some believer's there who will push for recognition of the illness. Link to comment Share on other sites More sharing options...
T_Mom Posted January 4, 2013 Report Share Posted January 4, 2013 Just found out that the The American Association of Pediatrics' annual convention (October) will feature a daily discussion about controversies...including PANDAS. http://www.aapexperience.org/ "Join in the debate about the latest controversies in pediatrics at our new daily point-counterpoint sessions focusing on formula feeding to newborns, ADHD, cardiac screening for sports, and the PANDAS hypothesis." Maybe this will further help our kids. T.Anna DS 14.5 (dx November 2012) That is VERY interesting...I wonder WHO is sponsoring/presenting this topic??? What this conference needs is a small panel of PANS doctors -- who are actively treating and seeing results sharing their findings!!! Somebody needs to be sure the NIH team (+Yale) know about this and may be able to hold the flag on behalf of the truth! (OK, I am climbing down off my soap box now! Link to comment Share on other sites More sharing options...
tpotter Posted January 4, 2013 Report Share Posted January 4, 2013 Hopefully Dr. K, Dr. L, Dr. Swedo, and Dr. Leckman (at the least) will make sure they are there. But, I have to agree, that I am very sceptical, because it uses the word "hypothesis". I wouldn't have put it past Johns Hopkins to have submitted this one. I doubt very much it could have been one of these people who submitted it, because it would have been listed as PANS and not used the term "hypothesis." Link to comment Share on other sites More sharing options...
T_Mom Posted January 4, 2013 Report Share Posted January 4, 2013 I wonder if AAP ever has patient/doctor/parents panels? Imagine a few "before" and "after" PANS treatment videos being shown there! I think a presentation at AAP -- by the Researchers and Doctors -- would be very powerful. Link to comment Share on other sites More sharing options...
nicklemama Posted January 4, 2013 Report Share Posted January 4, 2013 They are calling for abstract submissions. The deadline is mid April. How could we make this happen? Link to comment Share on other sites More sharing options...
Dedee Posted January 4, 2013 Report Share Posted January 4, 2013 I'm just saying I don't like the way this is presented at all. This isn't put out there like they are discussing up and coming Evidence based practice. It sounds like a forum for contraversial topics. This is NOT where this topic needs to be. ESPECIALLY in the pediatric community. Just last week, a pediatricians office locally acted as if they never heard of PANDAS / PANS. What is going on here???? One of the big PANS physicians needs to get in on this. This good do major harm to the forward steps that have been taken this past year. SCREAMING: HELP SOMEONE !!!!!!!!! Link to comment Share on other sites More sharing options...
mdmom Posted January 4, 2013 Report Share Posted January 4, 2013 I suspect some of the PANDAS docs we all see are staying below the radar simply because they would come under scrutiny for treating our kids. Let's not forget that many insurance companies still aren't on board with PANDAS (I just fought this fight for 8 months with mine) and docs need to get paid for their services. So "rocking the boat," by coming out in the open puts us all at risk for losing our treating docs. Sucks, really. But I'm hopeful that the attitudes will change, as one at a time, our kids get better. Link to comment Share on other sites More sharing options...
911RN Posted January 5, 2013 Report Share Posted January 5, 2013 (edited) Just found out that the The American Association of Pediatrics' annual convention (October) will feature a daily discussion about controversies...including PANDAS. http://www.aapexperience.org/ "Join in the debate about the latest controversies in pediatrics at our new daily point-counterpoint sessions focusing on formula feeding to newborns, ADHD, cardiac screening for sports, and the PANDAS hypothesis." Maybe this will further help our kids. T.Anna DS 14.5 (dx November 2012) This is not new....my Peds has been a practicing about 12-13 years and he told me PANDAS has been presented at every medical Peds conference he's ever attended. As "controversial', to boot. Edited January 5, 2013 by 911RN Link to comment Share on other sites More sharing options...
T_Mom Posted January 6, 2013 Report Share Posted January 6, 2013 I'm just saying I don't like the way this is presented at all. This isn't put out there like they are discussing up and coming Evidence based practice. It sounds like a forum for contraversial topics. This is NOT where this topic needs to be. ESPECIALLY in the pediatric community. Just last week, a pediatricians office locally acted as if they never heard of PANDAS / PANS. What is going on here???? One of the big PANS physicians needs to get in on this. This good do major harm to the forward steps that have been taken this past year. SCREAMING: HELP SOMEONE !!!!!!!!! I agree whole-heartedly -- this "presentation" of PANS is alarming. The International OCD conferences (two or three years ago? and then the more recent one--) have included some really excellent presentations by treating doctors -- and parents. We really need some presentations at the AAP -- in the hope that some will be helped, rather than institutionalized! Link to comment Share on other sites More sharing options...
thenmama Posted January 7, 2013 Report Share Posted January 7, 2013 (edited) to make that happen we'd probably need to hit AAP where it might actually register- reputation/PR. some publicity about how behind the times it is, and how being so out of date/out of touch with pediatric conditions and practice is harmful to pediatric patients-- children--would be a good start... edited to say: AAP's resistance/failure to get with the program is surely political-- and probably has more to do with some internal players or allegiances than it does PANDAS/pediatrics. Because of that, what's right or what it ought to do re: PANDAS doesn't matter and asking/expecting that isn't going to change anything. But, there's nothing like a PR nightmare to shake things up and break up allegiances. Think of any major org that's come under scrutiny due to scandal/bad PR in recent years--there's always insider fallouts, scapegoating, backtracking, etc. to calm the storm. If we want to get anywhere with AAP- we need to create that storm re: PANDAS to force those behind the scenes at AAP to choose between their players/allegiances or the org's reputation, etc. JMO Edited January 7, 2013 by thenmama Link to comment Share on other sites More sharing options...
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