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Buster

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I had a chance to read through the Singer's new article about "Moving from PANDAS to CANS".

 

I can't believe he's recommending Lumbar punctures and MRIs and not recommending a throat culture or MycoPlasma test.

 

On the silver lining side, it is apparent that the authors have finally read Dr. Swedo's 2004 paper and are now using a different criteria of "sudden 'explosive' onset of symptoms and course of recurrent sudden exacerbations and remissions".

 

This is quite different from Kurlan's 2008 paper where he used "clinical course characterized by the abrupt onset of symptoms or by a pattern of dramatic recurrent symptom exacerbations and remission".

 

What's wacky is that having just realized they didn't follow the right criteria in 2008, they then reference their paper with the wrong criteria for purported PANDAS saying "there is strong evidence suggesting the absence of an important role for GABHS”. Unbelievable. Did they even read their own study? Did they look at their P-values?

 

So many things wrong with the paper...

 

Buster

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For those medically-inclined brains, far more perceptive than my abilities are able to reach--

 

I can't help but wonder if a letter to the 'editor' of the esteemed journal would be at all helpful re: the inconsistencies?

Review boards often don't have the full-history behind the article, before vote "approve."

 

(Buster--thanks for weighing in on the article, appreciate it.)

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I keep thinking about all the flaws in the Kurlan and Singer papers and how much damage has been done with abstracts and titles that don't correspond to the findings of the paper.

 

As just one example, in the 2011 CANS paper, Kurlan and Singer make the classic fatal research error of assuming a failure to confirm is equivalent to disproving a hypothesis. Arrgh, did they even take statistics?

 

Their actual quote was "there is strong evidence suggesting the absence of an important role for GABHS [in tic and OCD disorders]" where they self-cite their 2008 longitudinal paper. Contrary to this assertion, the actual referenced paper showed that a purported PANDAS group had significantly more cases of GABHS than the controls. Sigh.

 

Perhaps they meant to say "there is strong evidence suggesting the absence of an important role for GABHS [in exacerbations of tic and OCD symptoms]", well the cited paper doesn't provide that evidence either. The paper failed to reach a P-value (probability of event) that was of any significance. In research, this means the experiment did not help reach a conclusion.

 

This whole element is part of what is known as the NULL hypothesis in research. You cannot prove the correctness or falseness of the NULL hypothesis, you can only say that the results of the experiment are consistent or inconsistent with the hypothesis.

 

Even for a hypothesis like "all swans are white", you might think that if you found a black one this would disprove the hypothesis. But you have to then consider the probability that the black one isn't even a swan. So, what is the probability that Kurlan/Singer purported PANDAS children actually match the criteria of PANDAS? In the CANS paper, they state that they didn't use Swedo's criteria -- so why are they calling it PANDAS?

 

They compared a group of kids with TS who have had GABHS infections with a group of TS kids who didn't have GABHS infections. This is not the same as comparing those who match the PANDAS criteria with controls. Arggh.

 

Buster

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Their actual quote was "there is strong evidence suggesting the absence of an important role for GABHS [in tic and OCD disorders]" where they self-cite their 2008 longitudinal paper. Contrary to this assertion, the actual referenced paper showed that a purported PANDAS group had significantly more cases of GABHS than the controls. Sigh.

 

 

It seems to me that Kurlan and Singer have spent an awful lot of time and energy trying to prove that strep alone does not trigger OCD and Tics. I could not agree with them more. I don't think that if you look at ALL of our kids - as a whole- strep is any more dangerous than mycoplasma, lyme, the flu, sinusitis, or a whole host of other things that trigger our kids. Some kids react more to strep, some to mycoplasma, or sinusitis, etc.

 

I believe the greatest flaw in their work is that they NEVER acknowledged the role of other pathogens in their paper - even though Swedo (as early as 1995 and 1998) noted that it was not ONLY strep that triggered exacerbations.

 

I know I read the papers through the lens of the parent of a child with PITAND - due mainly to sinusitis but also to viruses and a host of other infections ..... but when I read the 2008 longitudinal study I saw:

 

1. The kids in the "PANDAS" group (I recognize many of these kids probably did not have PANDAS) had more strep infections

 

2. The kids in the PANDAS group had more exacerbations

 

3. The kids in the PANDAs group were tested monthly for strep and if they had it their pediatrician got the results and was able to treat them with antibiotics if s/he desired (but no one kept track of which kids got antibiotics and which did not)

 

4. The researchers could not link the exacerbations to strep temporally as sometimes the kids with PANDAS tested positive for strep but did not have exacerbations (could this be from the quick treatment with antibiotics?), and sometimes they had exacerbations without testing positive for strep. (Note: they did not test for other illnesses - just strep)

 

 

UMM... so in my mind, that begs some new research questions that should be answered in future studies, such as:

 

 

1. Do kids with PANDAS have immune systems that make it harder to fight off infections like strep, and what makes their immune systems different?

 

2. Does monthly testing for strep and rapid treatment with antibiotics reduce the frequency of exacerbations? (surely, a monthly strep test and ASO/DNASE B would be far less expensive than the $$ poured into keeping our kids safe during exacerbation and returning them to function)

 

3. Do illness other than strep also lead to exacerbations?

 

As for the CANS article.... they DO talk about testing for strep, but the DO NOT have it in the table - a gross oversight (or purposeful omission?).

Edited by kimballot

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Does anyone know if Swedo et all are planning to respond to this - similar to the response to the "horse and Zebra" article? I am sure there are many politics involved and the folks need to plan to strategically respond in the best manner possible to not interfere with the white paper.

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Does anyone know if Swedo et all are planning to respond to this - similar to the response to the "horse and Zebra" article? I am sure there are many politics involved and the folks need to plan to strategically respond in the best manner possible to not interfere with the white paper.

 

 

I don't know if there is a plan to respond to the CANS article directly, but I have heard that the White Paper is coming out imminently.

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Again, I'll say, I truly believe (partly based on what a doc told me after the big Pow-Wow) that they know they are toast and they are "trying" to save face BEFORE the whole PANS thing hits the fans & they look foolish. "CANS .... PANS .... AAhh... We aren't that far apart. Let's now all get along. Picture, please." is what I truly think is their conniving scheme. Makes me SICK. Dawn

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Again, I'll say, I truly believe (partly based on what a doc told me after the big Pow-Wow) that they know they are toast and they are "trying" to save face BEFORE the whole PANS thing hits the fans & they look foolish. "CANS .... PANS .... AAhh... We aren't that far apart. Let's now all get along. Picture, please." is what I truly think is their conniving scheme. Makes me SICK. Dawn

 

 

 

If they are toast, it makes the "$hit on Toast" name seem all the more appropriate, doesn't it? :P

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