Hoping for a summary of the PANDAS conference

[AmySLP]

Any info? Is a summary to come?

[Iowadawn]

Any info? Is a summary to come?

 

All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented.

[peglem]

Any info? Is a summary to come?

 

All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented.

Discussing on social media has the potential to cause mass conversion disorder!

[Kiera]

Any info? Is a summary to come?

 

All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented.

Discussing on social media has the potential to cause mass conversion disorder!

Like, Like, Like!!!

[airial95]

Discussing on social media has the potential to cause mass conversion disorder!

 

 

This is absolutely true!!! When we were in Buffalo last visitng my in-laws, we swung by a "famous" lcoal neurologist there who said my 4 yo son didn't have PANDAS at all - it's actually conversion disorder, and his onset at 2 years old was directly related to all of his exposure to social media!!!

 

Sorry - couldn't resist the sarcasm!

[LNN]

Sorry to be a stick in the mud, but let's not bite the hands that feed us. Gathering support for this disease has been no small feat. If researchers and clinicians have asked that information, with a potential to be taken out of context, not be discussed in social media, I think we need to be respectful of that request. It is vitally important that theories and anecdotal evidence be tested, vetted, replicated and peer reviewed if we want diagnosis and treatments to become more widely accepted. I think it's a fair request. And if we don't honor it, then these sorts of symposiums may very well stop being open to the public.

[kos_mom]

Agree, but it would be nice if an official summary could be prepared and made publicly available...

 

Peglem--most amused by the mass conversion quip!

[airial95]

My post was meant to be a joke about the ridiculousness of "conversion disorder" - not the request to try to control how summary information was disseminated.

 

Whether we agree or disagree with the request - I think we can all understand the reasoning behind it. I've seen first hand in my profession how easily a single piece of research can be distorted and expanded far beyond what it actually says!

 

Sorry if my little joke was mis-interpreted...

[peglem]

I really do have the utmost respect, bordering on awe for those professionals with the courage and integrity to stand up and figure this out for us. The request just instantly brought the whole conversion disorder up in my mind. I understand them not wanting it thrown to the public out of context, but I think if they are presenting something publicly then they should have an official summary available so that when it is discussed (and I think it will be despite their request)there is an official statement of some sort that can set the record straight. I wish I could travel to the conference and get it straight from the horses mouth, but I can't afford the conference and I have a sick kid here that keeps me pretty homebound anyway. So how are we supposed to get the information?

[LNN]

Don't get me wrong - I share your feelings about Conversion Disorder and did see the humor. I just worried the thread would take on an unintended tone. (plus I'm cranky over a teacher issue today and feeling a little sensitive, I suppose).

 

As for any sort of official summary, I don't know of any conferences that do that. About the closest thing I've ever seen is Scott F.'s "Better Health Guy" blog. Scott attends a number of lyme conferences and presentations and reports on them on his site. Perhaps Vickie or Diana would be able to offer an explanation or "blessed" summary?

[kos_mom]

airia195--was just amused with the mass conversion disorder dx ridiculously popping up once again in LeRoy and with the far-fetched (or perhaps not quite so far-fetched!) idea of a Mechtler or similar pinpointing a report on a conference as a source of a mass conversion disorder as a desparate justification for his dx! Didn't take it as a negative comment on the conference policy.

[trggirl]

I hate that they are taking this stand of withholding information. It is going to be years before things are tested, proved, and understood. And in the meantime, we are left fighting for treatment!!?? :( Why not share the information and then let us discuss it with our doctors and make decisions based on the child's situation and the possible risks versus benefits?! I did read the facebook request and just felt it was wrong, wrong, wrong. I try very hard not to step into anything controversial as I feel we are all fighting for the same thing, but in this case I think the child can be hurt. Information should be disseminated, not withheld.

[airial95]

LLM - ironically - I was trying to make a joke to keep this thread from spiralling into negativity like the last!

 

But like I said, I understand the request. I also have a child suffering, so I also want to hear what's new and being discussed. That said - Here's my real world, non medical expamle:

 

I'm an traffic engineer, and about 15 years ago - a paper was published evaluating the safety making a right turn followed by a U-turn leaving a shopping center vs. being able to make a direct left turn out of the shopping center. The study "concluded" that the U-turn was safer then the direct left turn.

 

For YEARS this was taken as gospel - and we heard the mantra over and over again how U-turns are safer than left turns...blah blah blah. Considering the university that published this paper was my alma mater, I was not happy about how this was being taken as gospel - especially once you actually READ the study - and discovered that the paramaters were very narraow and concluded that on certain types of roads (6-lanes) where the shopping center exit was more than 2,000 feet from the intersection, and the intersection where you were U-turning had a traffic signal. They didn't even look at any intersections that didn't meet that narrow criteria.

 

Folks just read the abstract of the paper and started singing the tune of "U-turns are safer" when that was only the case in a very specific situation - the University in question published a series of papers over the following years evaluating the same situation but on many different roadway characteristics and driver populations and lo and behold - it wasn't always the case.

 

But it took YEARS to break the "proven fact" that U-turns were safer. The worst part about it was that the agecny that paid for the research (DOT), never actually READ the study before implementing dozens of policies based on the "findings" that U-turns were safer.

 

We had years of bad local design being driven by this research. The research itself was good, it wasn't flawed - it was how it was being misinterpreted by professionals - who should have been able to read the study and know how to apply the findings properly. The issue was - no one read farther than the summaries/abstracts.

 

It wasn't until other professionals (who HAD read ALL of the research) started pushing back in situations where U-turns weren't appropriate (usually by asking if the person had actually READ the paper) that anyone finally paid attention. But here we are, over a dozen years later and I still hear the universal truth that "U-Turns are safer."

 

And all of this was before the world of social media (although - I'm not sure how much of a "trending topic" U-turn safety would be on Twitter ) So I understand the dangers of small snippits of information being thrown out there out of context being potentially dangerous to our cause.

 

Sorry to bore you all with a traffic engineering story...

Edited September 27, 2012 by airial95

[trggirl]

"I've seen first hand in my profession how easily a single piece of research can be distorted and expanded far beyond what it actually says!"

 

And I have seen first hand how a single piece of research can spark an idea in an interested medical professional that leads to a new and exciting path which might help a patient. Again, I really, really don't want to be negative and controversial. We are all on the same team fighting for our children. I just feel these kids deserve the benefit of any information presented so a professional can evaluate and make decisions that may help the child. I would have loved to be at that conference. It's just not always possible. I won't post again on this topic. I just felt I needed to speak up. The facebook post made me tremendously sad, like hitting another brick wall in finding elusive PANS information.

[norcalmom]

I think I can say without getting anyone in trouble that the majority of presentations were on other autoimmune diseases. From the pandas folks - only new material I saw that could be related to pandas in the shorter term was from Drittan, the host of the seminar, and his info is not specifically related to panadas - but uses his technology to show the BBB of mice after strep infections. He mainly researches stroke, and got drawn into the are of pandas due to the BBB aspect of it (becuase he has ways to actully look at it in live mice). Here is a page on him. In terms of research, he's just starting on pandas. Some of these people work their whole lives on one piece of a puzzle to see it if they can solve it and what it might mean in a bigger picture in terms of health.

http://devcell.bio.uci.edu/faculty/dritan-agalliu/

 

So short tem - nothing new for the majority of the pandas population that I saw. I feel like we were extremely privileged to be there. Even though there were many of the top MS reserachers presented - the invitation was not open to MS patients.

 

 

The most AMAZING (not that it isn't all amazing) work was presented on a peptide that can block a very specific channel that "over produces bad stuff"(my technical translation) in certain autoimmune disease. About to start human trials in Helsinki Oct 8th. They are starting with MS. But works with a number of other diseases like RA too. Not all, but some. He said he'd test some pandas kids blood for levels of the "bad stuff" and if channel blocking might be appropriate for our group....if a pandas person there gets him some samples - I really hope Dr C was int he room when he said that, a simple communication like that can change the entire game sometimes. The name is George Chandy. Human trials in Helsinki bcs FDA taking way too long - US stuff will happen, but Europe is quicker so they are starting there. 30 years he's worked on this, and the route to where he is should this work in humans the way it does in mice and primates, was serendipitous to say the least. Fortune favors the bold - and the persistent! ITs effect in MS is incredible - because MS paralyzied mice can get up and walk around after taking it bcs the myelin will rebuild itself in many cases.(I think that is mostly true statement...again my translation).

here is a press release on that:

http://www.sbir.gov/sbirsearch/detail/6533

 

Cunninghams going to be publishing some papers...no date given, no surprise, didn't share what on other than one study will inculde information from the hundreds of blood samples she took over the years and ran her tests on. Her lab hopes to open early in 2013.

 

Its clear to me that we need to move away from arguing about what causes our kids condition. Like the other autoimmune diseases - first we need to prove it is a disease. Diseases get stuff - like special status with FDA and funding for Rare Diseases research and drug insurance special status etc....so proving it has specific autiommune markers (cunningham's research) and that it has physical proof of attacking a physical organ (agalliu's research, although he's not researching pandas - just strep infected mice at the moment) is really, really important for us.

 

Also - most autoimmune diseases don't know the cause. I had a minor autoimmune thing that happened to me and the docs said - well, in 50% of the cases we know this is relaed to Lupus, Hep C or exposure to amalgam fillings....so they had to test me for Lupus and Hep C to rule them out. But that doesn't mean they didn't treat me!! Because - in 50% of the cases - they had no idea what casues the condition. There is however a test for it, and a very specific autimmune marker for it. But cause? most of the time - they can't track that down. But with a test and a treatment - frankly I didn't care what the cause was (well, unless it was lupus or hep C...) because it didn't matter. And in alot of cases we dont' find strep in our kids, and on top of that - strep is everywhere - so proving the casue is hard hard hard...

 

Hopefully soon we will minimally have a test - and the docs can run that test (cunninghams) use that info to then say - well, in 50% of the cases we thing this is caused by strep - and minimally treat the inciting cause of strep, and maximumly treat the autoimmune sequela. And hopefully, along the way - they will pick up on the other things like mycoplasma and other infections that may be underlying. Just having a test - gives pandas credibility in doctors eyes. Pediatricians can perscribe antibiotics and check for infections that are statistically liked to her tests. It lowers their risk of doing something wrong or without something solid to base decision upon.

 

I left feeling mad at our medical system, but hopeful that the dedicated, persistent, scientists on our side will prevail.