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Moving From PANDAS to CANS?


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In 2011, how many articles disputed PANDAS? One or two? In 2011, we had 26 news articles, a handful of case studies, a resurrected NIH study, various articles in respected journals including the Journal of Pediatrics (same journal this is in), and represtation at various conferences all acknowledging the existence of infection triggered neuropsychiatric symptoms. These guys have to play catch up. They are being forgotten. They don't like that.

 

 

so you have more faith in the outcome, regardless of the motivation, than me? i would love that to be true -- maybe help soften my rough edge for them. . .

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I have faith in the overall outcome...that someday our children will be acknowledged by all, they will receive treatment, that this controversy will end, correctly.

 

Hey Vickie, Msg your e-mail if you want the full-text.

PS I think your inbox is full.

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Maybe we should have parents vote on the name?

1) PANDAS/PITANDS

2) PANS

3) CANS

4) TIN CANS

5) LBS

6) The Disorder Formerly Known as PANDAS

 

Oh, BTW,here's an e-mail blast from B. Maloney re. this article:

 

The Leading Nonbeliever (page 201 of Saving Sammy) and his followers have published another article.

 

 

They advocate in the Journal of Pediatrics (http://www.jpeds.com/article/S0022-3476(11)01214-5/abstract) for eliminating PANDAS as a diagnosis and instead want all children with acute onset psychiatric conditions lumped together and treated only with psychotropic meds. Is it possible that a financial interest is driving that suggestion? Because, honestly, Sammy would be dead if a member of this cult had treated him.

 

 

They make no reference to (1) a single research paper from Tanya Murphy, MD whose studies are replete with the science backing PANDAS, (2) the Columbia mouse study that demonstrated that strep antibodies produce OCD (see Learn page of pandasfoundation.org), or (3) Kurlan's groundbreaking theory about the link to pizza (also described on page 201 of Saving Sammy). I will copy both Kurlan and Singer on this email. Perhaps one will respond and shed some light on why an entire body of scientific research would be "overlooked," as well as give us an update about the pivotal pizza theory.

 

 

No worries...luckily, I'm "it" so they are going to lose (page 160).

 

 

Hope to see you in Milwaulkee - full schedule to follow soon!

 

 

Beth

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I vote we just call it *#@* and leave it at that!!!

 

I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest!

 

Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says!

Send him the articles from the last three years, the interviews, etc.

 

Who are the co-authors (Wolf seems to be a colon-guy !?! maybe just in training...)

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T.Mom--

genius idea!! you make a few appointments, I make a few-- we could keep him busy for a while!

 

and you must be mad--- I do not think I have ever seen you get remotely close to typing *@#* before! HA

 

Oh & I vote for the Prince-inspired name.

 

Seriously, though, I just read the full article. I am angered by it. I feel like I have been slapped in the face. I suppose that is a total emotional reaction, but I really do. This is like they are trying to convince everyone (if they say it enough times) that PANDAS is such a non-accepted diagnosis that we need to abandon it. I wonder what Dr S thinks of this article?

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In 2011, how many articles disputed PANDAS? One or two? In 2011, we had 26 news articles, a handful of case studies, a resurrected NIH study, various articles in respected journals including the Journal of Pediatrics (same journal this is in), and represtation at various conferences all acknowledging the existence of infection triggered neuropsychiatric symptoms. These guys have to play catch up. They are being forgotten. They don't like that.

:D:D LIKE :D:D AGREE :D:D

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I had the same thought T. Mom!!! Too bad most specialists think they are higher up than God and can't take a phone call to answer these questions. But you have a great point....maybe we could all just "use" them for the blood workups, and then move on.......dun dun dunnnnnnn.......

 

quote name='T.Mom' timestamp='1325891488' post='128589']

I vote we just call it *#@* and leave it at that!!!

 

I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest!

 

Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says!

Send him the articles from the last three years, the interviews, etc.

 

Who are the co-authors (Wolf seems to be a colon-guy !?! maybe just in training...)

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