PANDAS a topic at AAP convention!

[Ozimum]

I had a bit of time to look around the info for the conference and found the following:

 

Leonard R. Krilov is speaking on: PANDAS or PANS: Infection or not?

 

Leon S. Dure (Uni of Alabama) is doing a session on: Tics, Pandas and other animals.

(I think Dure may have worked with Leckman on “A Prospective Longitudinal Study of PANDAS (High-Low study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections. There is no overlap.”

and Kurlan on “PANDAS and Strep Infection: Are they linked? (PANDAS-Epi study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections.”)

 

(And interestingly... David R. Hill, MD is talking on: “I’ve Been Doing Some Research...” Dealing With Families With Info From the Internet.

Hmm. Ya gotta wonder how that will run...!!)

[T_Mom]

I had a bit of time to look around the info for the conference and found the following:

 

Leonard R. Krilov is speaking on: PANDAS or PANS: Infection or not?

 

Leon S. Dure (Uni of Alabama) is doing a session on: Tics, Pandas and other animals.

(I think Dure may have worked with Leckman on “A Prospective Longitudinal Study of PANDAS (High-Low study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections. There is no overlap.”

and Kurlan on “PANDAS and Strep Infection: Are they linked? (PANDAS-Epi study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections.”)

 

(And interestingly... David R. Hill, MD is talking on: “I’ve Been Doing Some Research...” Dealing With Families With Info From the Internet.

Hmm. Ya gotta wonder how that will run...!!)

 

 

Thanks for this Ozimum! Interesting!

 

I am struck that each of these AAP presentations touches on the specific issue of "STREP" --- While I appreciate that, as we know of course that strep has been shown to be linked with CHOREA AND OCD with the Sydenham illness for example, so we already have established that there is a ticcing/OCD connection, to strep and all, but WHAT ABOUT PANS !!!

 

The issue, in my mind, should be centered on the fact that ANTIBIOTICS and STEROID BURSTS and IVIG and PHERESIS are clearing the VAST majority of the kids treated for PANS of TICCING AND OCD, !!! not to mention the many, many other symptoms we all know (and hate) all too well of PANS -- (wetting themselves, ODD, writing/academic failure, etc.)

 

Why are these idiots so bent on proving/disproving the strep connection, instead they should be observing the FACT that kids are getting well again with these immune modulating therapies!? !

 

That LIVES are being saved -- literally -- by the PANS treating doctors, who are putting themselves "out there" and only using researched (our tax dollars at work!), evidence-based treatments. THAT is what everyone of them should be reporting on -- THAT is the story here and anything else only puts off the healing these children deserve.

Edited January 7, 2013 by T.Mom

[PowPow]

 

 

Why are these idiots so bent on proving/disproving the strep connection, instead they should be observing the FACT that kids are getting well again with these immune modulating therapies!? !

 

 

 

Excellent point T.Mom!

That is it. Who the heck cares who causes this frankly, at this point~ if it is strep or lyme or vaccines or whatever. Our kids (mine at least!) have a clear autoimmune problem that made them nuts. They got immune- modulating treatments and they are BETTER. Much, much better. Someone with some clout please talk about that somewhere!!!!

[ChrissyD]

For what it's worth, I shot this email off the other night to the conference organizers. I'm sure it will go nowhere but it made me feel better.

 

 

Hello,

 

I'm reviewing your conference agenda for Orlando and I have one request.

Please do not schedule a session on 'controversies' and include PANDAS on your panel. You do a grave disservice to those children out there who are suffering with true severe auto-immune reactions to strep infections. We do not need any more pediatricians being mis-informed that this isn't a true diagnosis. We parents have been through ###### & have had to travel long distances at great expense to find pediatric specialists knowledgable in this disorder, in order to heal our children. To even refer to it as a hypothesis is an insult. I suspect you have already recruited some of the notorious naysayers to speak on your 'controversy' panel, such as Drs. Kurlan and Singer. They sadly have their own agendas & do nothing but cause our children to needlessly suffer.

It's time for the AAP to keep up with the current research and realize that PANDAS is indeed a well-established and complex disorder. Your conference would better serve the needs of the pediatric community by presenting the current evaluation & treatment protocols for PANDAS as developed by the leading researchers at the NIMH. I'm sure Dr. Susan Swedo would be happy to oblige.

[rowingmom]

@ ChrissyD - Good for you!!! Perhaps that will cause someone to stop and think, if just for a moment.

Edited January 7, 2013 by rowingmom

[EAMom]

I had a bit of time to look around the info for the conference and found the following:

 

Leonard R. Krilov is speaking on: PANDAS or PANS: Infection or not?

 

Leon S. Dure (Uni of Alabama) is doing a session on: Tics, Pandas and other animals.

(I think Dure may have worked with Leckman on “A Prospective Longitudinal Study of PANDAS (High-Low study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections. There is no overlap.”

and Kurlan on “PANDAS and Strep Infection: Are they linked? (PANDAS-Epi study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections.”)

 

(And interestingly... David R. Hill, MD is talking on: “I’ve Been Doing Some Research...” Dealing With Families With Info From the Internet.

Hmm. Ya gotta wonder how that will run...!!)

 

okay, this is concerning that the speakers are not PANDAS/PANS experts, rather naysayers or docs with little clinical experience with PANDAS. Why can IOCDF get Cunnigham, Swedo, Latimer, Jenike, and Murphy to speak at one conference, and all these guys can get as speakers are some docs I've never heard of. Wouldn't it be more reasonable to get 'experts' in OCD/PANDAS rather than Dure/Hill???

Edited January 12, 2013 by EAMom

[thereishope]

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Edited September 29, 2019 by Vickie

[T_Mom]

I had a bit of time to look around the info for the conference and found the following:

 

Leonard R. Krilov is speaking on: PANDAS or PANS: Infection or not?

 

Leon S. Dure (Uni of Alabama) is doing a session on: Tics, Pandas and other animals.

(I think Dure may have worked with Leckman on “A Prospective Longitudinal Study of PANDAS (High-Low study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections. There is no overlap.”

and Kurlan on “PANDAS and Strep Infection: Are they linked? (PANDAS-Epi study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections.”)

 

(And interestingly... David R. Hill, MD is talking on: “I’ve Been Doing Some Research...” Dealing With Families With Info From the Internet.

Hmm. Ya gotta wonder how that will run...!!)

 

okay, this is concerning that the speakers are not PANDAS/PANS experts, rather naysayers or docs with little clinical experience with PANDAS. Why can IOCDF get Cunnigham, Swedo, Latimer, Jenike, and Murphy to speak at one conference, and all these guys can get as speakers are some docs I've never heard of. Wouldn't it be more reasonable to get 'experts' in OCD/PANDAS rather than Dure/Hill???

 

 

The call for presentations is still out -- I believe -- Can they still get in to present -- Oh, PLEASE !!!

 

We really need some "stabilization" of this conversation at the AAP convention!

[ChrissyD]

I had a rather 'interesting' back & forth email exchange with the conference organizer. Was told that a 'leading pediatric neurologist' from Johns Hopkins would be choosing the speakers, so it would surely be an excellent and balanced panel. Sigh, it's not looking good.

[T_Anna]

Maybe it's time to start a grass roots email campaign or petition. Saving Sammy has a l

[T_Anna]

Oops, sent too quickly. I meant to say that the Saving Sammy Facebook has a lot of followers too. Not sure how to go about this, but there are many readers here, why not organize some sort of campaign?

 

Anyone have experience with this or know anyone who can tell us how to do this?

 

T.Anna

DS 14.5

[smartyjones]

. Was told that a 'leading pediatric neurologist' from Johns Hopkins would be choosing the speakers, so it would surely be an excellent and balanced panel. Sigh, it's not looking good.

 

 

YIKES!!!!!!!!!!!!!!!!!

[Ozimum]

Unfortunately it appears the website page for the list of Sessions and Abstracts at the conference is not currently available. This was the link I used: http://s36.a2zinc.net/clients/aap2013/NCE2013/public/URLRedirect.aspx?role=A

 

Edit to add: AAP is conducting a number of courses across the USA through 2013 and the session called 'PANDAS or PANS: Infection or not' is among them. See link for the catalogue of sessions: http://s36.a2zinc.net/clients/aap2013/NCE2013/public/URLRedirect.aspx?role=A

But annoyingly, I've just found that link goes back to the unavailable page. Ok...if you want to find the catalogue I suggest you Google: Pandas or PANS: Infection or not Krilov. That's how I found the catalogue.

Edited January 13, 2013 by Ozimum

[EAMom]

. Was told that a 'leading pediatric neurologist' from Johns Hopkins would be choosing the speakers, so it would surely be an excellent and balanced panel. Sigh, it's not looking good.

 

 

YIKES!!!!!!!!!!!!!!!!!

 

Yes...obviously that is Harvey Singer, the neurologist who runs "PANDAS studies" on kids that actually have garden variety Tourettes. This is from Swidey's Boston Globe article http://www.latitudes.org/forums/index.php?showtopic=18829&st=0:

 

Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way.

 

Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point.

 

Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.”