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Yeah, I was one of the parents who defended Dr. Leckman based on personal past experience. ( http://www.latitudes.org/forums/index.php?...ost&p=60635 )

 

I admit that paragraph about "PANDAS is also frequently diagnosed in the community..." stuck in my craw. But - as I read this - I interpreted it to say that PANDAS does exist and can be exacerbated by stress as well as by strep. Not a shocker, as others have pointed out: stress aggravates just about any medical condition. And we've clearly seen this with our son - the stress of doctor appts definitely set him off during the height of exacerbations.

 

Again, all I can tell you is that Dr. Leckman has been very helpful and gracious to Diana P during all of her PANDAS efforts, and he was similarly generous to our family. But it is disheartening to still see sentences like "...some version of PANDAS likely does exist." It's much more than likely to us, eh? I suspect this is the scientist in him (and his co-authors) saying "we know there's something going on with these kids, and it's related to autoimmunity and some kind of infectious trigger(s), but we're not sure which ones or how many yet." I guess I can buy that. Strep, Myco p, Lyme co-infections, EBV... seems like there may be multiple bugs responsible for tormenting our children.

 

 

I thought, in its best light, they were saying stress can be a trigger for exacerbation.

 

Didn't Leckman's name come up in a questionable way a few week ago w/NY Times article?? I seem to recall several parents defending him as definitely pro-pandas.

 

Perhaps he needs to be more careful in how his work is conveyed by others. This article came across as agenda driven to me.

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Worried Dad, I sort of defended him too. I am still a little confused by the article and really need to disect it. Maybe it's the way the reporter inserted his quotes or something. I do think a simple comment posted by a few parents saying that a diagnosed PANDAS child can have an increase in PANDAS symptoms with stress, etc etc. And post a link to a reputable website for more info. I still can't do it today. Maybe I will be able to do it tomorrow.

Edited by Vickie
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Worried Dad, I sort of defended him too. I am still a little confused by the article and really need to disect it. Maybe it's the way the reporter inserted his quotes or something. I do think a simple comment posted by a few parents saying that a diagnosed PANDAS child can have an increase in PANDAS symptoms with stress, etc etc. And post a link to a reputable website for more info. I still can't do it today. Maybe I will be able to do it tomorrow.

 

 

The quoted comment in the third paragraph is the only part of the article that definitely came from Leckman, the way I read it. Do you know who wrote the rest? The spin isn't in the quote, but all the summarizing and referencing to research that is not specifically identified.

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Okay. here is the link the article as it appears by elsevier...

 

http://www.elsevier.com/wps/find/authored_...anynews05_01495

 

The title in that page appears as so...

 

PANDAS Don’t Like Stress

 

The Impact of Infections and Stress on Children with Tourette Syndrome And Obsessive-Compulsive Disorder

I actually do not see the author of the article. Does anyone else?

 

All I see is this...

 

Media Contact:

Maureen Hunter

Strategic Marketing Manager - Elsevier

+1 215-239-3674

m.hunter@elsevier.com

 

Boy, I really don't want to start another witch hunt where we all attack someone. So, I want to really think this through.

 

The way this article is done is confusing! I'd just drop it if it wasn't hitting so many outlets.

 

This is Leckmans' "paragraph"

They then used this data to examine the power of the infections and measures of psychosocial stress to predict future tic, obsessive-compulsive, and depressive symptom severity.

Dr. James Leckman, senior author of this project, explains their findings: “We found that periods of tic and OC symptom worsening were independently associated with antecedent newly diagnosed strep infections as well as higher levels of antecedent psychosocial stress. When we looked at just the PANDAS, we also found similar results.”

 

So, who knows if he actually even read the whole article. I think the issue is with Elsevier, not necessarily Leckman, and how it was written.

 

So, the part we have a problem with is...

 

PANDAS remain a controversial topic for many Tourette’s experts. For example, another recently completed intensive longitudinal study that tracked a larger number of PANDAS cases found little evidence to support a link between newly diagnosed strep infections and a marked worsening of tic or obsessive-compulsive symptoms.

 

 

PANDAS is also frequently diagnosed in the community without the application of all the published diagnostic criteria. This has resulted in unwarranted use of antibiotic treatment for TS or OCD when there is no evidence of a recent strep infection.

 

So, when we write a comment, include a link to the Columbia mouse study to comabat the study they used to disprove PANDAS. Then Swedo's quote about other triggers in subsequent episode to combat the second paragraph about no strep infection and remind them about how some kids will have strep w/o a rise in titers, if that is what they finally used to deem they did not have a strep infection. And, finally, how more research needs to be funded so an actual diagonsitic test is developed to avoid all the confusion in the med community.

 

Anything else?

Edited by Vickie
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Sounds good to me!

 

 

So, when we write a comment, include a link to the Columbia mouse study to comabat the study they used to disprove PANDAS. Then Swedo's quote about other triggers in subsequent episode to combat the second paragraph about no strep infection and remind them about how some kids will have strep w/o a rise in titers, if that is what they finally used to deem they did not have a strep infection. And, finally, how more research needs to be funded so an actual diagonsitic test is developed to avoid all the confusion in the med community.

 

Anything else?

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So, who knows if he actually even read the whole article. I think the issue is with Elsevier, not necessarily Leckman, and how it was written.

 

So, the part we have a problem with is...

 

PANDAS remain a controversial topic for many Tourette’s experts. For example, another recently completed intensive longitudinal study that tracked a larger number of PANDAS cases found little evidence to support a link between newly diagnosed strep infections and a marked worsening of tic or obsessive-compulsive symptoms.

 

 

PANDAS is also frequently diagnosed in the community without the application of all the published diagnostic criteria. This has resulted in unwarranted use of antibiotic treatment for TS or OCD when there is no evidence of a recent strep infection.

 

So, when we write a comment, include a link to the Columbia mouse study to comabat the study they used to disprove PANDAS. Then Swedo's quote about other triggers in subsequent episode to combat the second paragraph about no strep infection and remind them about how some kids will have strep w/o a rise in titers, if that is what they finally used to deem they did not have a strep infection. And, finally, how more research needs to be funded so an actual diagonsitic test is developed to avoid all the confusion in the med community.

 

Anything else?

 

I agree that they likely did not read the article or only read it with the "spin" they wanted. Here are some points that stand out to me - but I tend to get caught up in details more than others:

 

Thank you to Dr. Leckman and colleagues for investigating the role of the immune system in Tics and OCD.

 

1. This was a study of kids with Tics and OCD compared to kids without. In actuality, only 11 out of 46 kids with tics and OCD in the study had PANDAS.

 

2. The study found that while stress does increase the likelihood of Tics, OCD, and Depression in kids with Tic disorders (which is not a new finding), Strep exposure alone also increased the likelihood of tic and OCD exacerbations, but not depression. This means that Strep may be affecting the brain in a manner that is DIFFERENT from general stress.

 

3. The study also found that kids in the PANDAS subgroup had more infections than the other kids with tics and OCD, and another study in the same journal found that kids with PANDAS had significantly lower total IGA and lower and anti-myelin basic protein (MBP) than kids with non-PANDAS tic disorders or kids without tic disorders

(http://www.ncbi.nlm.nih.gov/pubmed/20006327). This means that a group of kids with Tics and OCD seem to have immunological underpinnings to their disorder.

 

4. Unfortunately, both the current (stress) study and the "recently completed intensive longitudinal study that tracked a larger number of PANDAS cases [that] found little evidence to support a link between newly diagnosed strep infections and a marked worsening of tic or obsessive-compulsive symptoms" included many children who were on medication to reduce tics and OCD, so it is impossible to know the true effect of infection on their behaviors, as the tics and OCD were likely masked to some extent.

 

 

Finally - thank you to everyone who is helping to gain a better understanding of PANDAS. Through this research we can identify the most efficient means of addressing the immune problems in this group of children.

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