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Moving From PANDAS to CANS?


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I don't know if I like CANS any better than PANDAS, although the explanation of the acronym (Childhood Acute Neuropsychiatric Syndrome)seems easier. Here's the abstract--I don't know if anyone can get the complete article.

 

 

 

 

 

The Journal of Pediatrics

 

.Article in Press

Moving from PANDAS to CANS

 

Harvey S. Singer, MD

AffiliationsJohns Hopkins University School of Medicine, Baltimore, MDReprint requests: Harvey S. Singer, MD, Rubenstein Child Health Bldg, 200 N Wolfe St, Suite 2158, Baltimore, MD 21287.,

Donald L. Gilbert, MD

AffiliationsCincinnati Children’s Hospital Medical Center, Cincinnati, OH

David S. Wolf, MD, PhD

AffiliationsJohns Hopkins University School of Medicine, Baltimore, MD

Jonathan W. Mink, MD, PhD

AffiliationsUniversity of Rochester School of Medicine, Rochester, NY

Roger Kurlan, MD

AffiliationsAtlantic Neuroscience Institute, Summit, NJ

Received 29 August 2011; received in revised form 21 October 2011; accepted 14 November 2011. published online 26 December 2011.

Corrected Proof

 

Abstract

 

Encountering a previously healthy child with the acute, sudden onset of obsessive-compulsive behaviors, tics, abnormal movements, or other neuropsychiatric symptoms poses a dilemma for most physicians. The differential diagnosis is broad (infectious, post-infectious, drug-induced, autoimmune, metabolic, traumatic, psychogenic, etc), and the selection of rational therapeutic agents is dependent on the identification of a specific etiology or symptom complex. One entity in particular, pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is frequently considered because of its apparent association with a highly prevalent bacterial infection. This report reviews each of the required clinical criteria for PANDAS. On the basis of inconclusive and conflicting scientific support for this diagnosis, a broader concept of childhood acute neuropsychiatric symptoms (CANS) is proposed. Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy.

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Does the "acute" sound like a good word to be a part of the name? The understanding I have of PANDAS from time spent on here is that the situation seems fairly chronic rather than acute.

 

 

Perhaps that's because many here seem to have not caught it early due to lack of medical help?

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Perhaps I'm just jaded by time and previous "pearls" of Kurlan's wisdom, but it seems to me his advocating for "CANS" is just another one of his many steps backwards, away from medical basis and intervention for our kids, and referring again to those "neuropsychiatric" diagnoses and interventions with which he has previously alligned himself: depression, OCD, TS, ADHD, bi-polar and SSRIs, antipsychotics, etc. For heaven's sake, he's even taken the "A" for "Auto-immune" and morphed that into "Acute." Meaning, I'm reading between the lines here, we may have experienced a sudden, "acute" onset, but it's not "auto-immune." It's not medical, Madam; it's all in your head. :angry:

 

I think, if accepted within the medical community, this is another giant step backwards. Shame on him! :(

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I don't know if I like CANS any better than PANDAS, although the explanation of the acronym (Childhood Acute Neuropsychiatric Syndrome)seems easier. Here's the abstract--I don't know if anyone can get the complete article.

 

 

 

 

 

The Journal of Pediatrics

 

.Article in Press

Moving from PANDAS to CANS

 

Harvey S. Singer, MD

AffiliationsJohns Hopkins University School of Medicine, Baltimore, MDReprint requests: Harvey S. Singer, MD, Rubenstein Child Health Bldg, 200 N Wolfe St, Suite 2158, Baltimore, MD 21287.,

Donald L. Gilbert, MD

AffiliationsCincinnati Children’s Hospital Medical Center, Cincinnati, OH

David S. Wolf, MD, PhD

AffiliationsJohns Hopkins University School of Medicine, Baltimore, MD

Jonathan W. Mink, MD, PhD

AffiliationsUniversity of Rochester School of Medicine, Rochester, NY

Roger Kurlan, MD

AffiliationsAtlantic Neuroscience Institute, Summit, NJ

Received 29 August 2011; received in revised form 21 October 2011; accepted 14 November 2011. published online 26 December 2011.

Corrected Proof

 

Abstract

 

Encountering a previously healthy child with the acute, sudden onset of obsessive-compulsive behaviors, tics, abnormal movements, or other neuropsychiatric symptoms poses a dilemma for most physicians. The differential diagnosis is broad (infectious, post-infectious, drug-induced, autoimmune, metabolic, traumatic, psychogenic, etc), and the selection of rational therapeutic agents is dependent on the identification of a specific etiology or symptom complex. One entity in particular, pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is frequently considered because of its apparent association with a highly prevalent bacterial infection. This report reviews each of the required clinical criteria for PANDAS. On the basis of inconclusive and conflicting scientific support for this diagnosis, a broader concept of childhood acute neuropsychiatric symptoms (CANS) is proposed. Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy.

 

 

Interesting, because Swedo, Cunningham, etc are using: PANS (Pediatric Acute-Onset Neuropschychiatric Syndromes.) If this article is true, this could be a HUGE turn-around. We're going to see Dr. L. tomorrow. I'll try to remember to ask her what she knows about this article.

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The movement away from "autoimmune" towards "acute" bothers me too. Too many other things can be acute and too many PANDAS kids have an apparently non-acute non-classic presentations (not sudden onset). Plus, non-PANDAS OCD can often seem to start suddenly (esp. if you have nothing to compare it to.)

 

I also like "autoimmune" b/c it puts the emphasis on the right place which is the cause and treatment of the problem.

Edited by EAMom
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The movement away from "autoimmune" towards "acute" bothers me too. Too many other things can be acute and too many PANDAS kids have an apparently non-acute non-classic presentations (not sudden onset). Plus, non-PANDAS OCD can often seem to start suddenly (esp. if you have nothing to compare it to.)

 

I also like "autoimmune" b/c it puts the emphasis on the right place which is the cause and treatment of the problem.

I agree, especially if the acute presentation was during the toddler years and overlooked or misinterpreted.

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I looked at the article.

 

My take is that Kurlan has "pie on his face" as he realizes (after the white paper meeting) that PANDAS is a real entity. So, he's trying to get around it by explaining all the problems/difficulties re making a PANDAS diagnosis, and then lumping PANDAS into a big pot with many other syndromes/diseases (drugs, toxins, trauma, encephalitis etc.) that could also cause acute neuropsychiatric changes in a child. In doing so, he minimizes PANDAS. It is a face saving measure on his part.

 

He also references his own previous "PANDAS" studies (which didn't have real PANDAS kids in them, they were children with long-standing tourettes) AND confuses the whole concept of strep carriers:

1) presumes "carriers" can't get PANDAS (page 1 last paragraph) --a real thorn in my side since Kaplan (WHO strep expert) himself said my dd would fit his defintion of a carrier (she "carried" GABHS for months without clearing...her only "symptoms" were PANDAS related, OCD, anorexia, bipolar behavior, tics).

2) says "carriers" have no immune response to strep (page 1 last paragraph)

3) then contradicts himself by stating that GABHS carriers can "have a protractedly elevated antistreptococcal antibody titers" (page 2 1st paragraph) Isn't an elevated strep titer a type of immune response (which he just said carriers don't have)? It was also my understanding that it is not really known (or studied) if carriers tend to have high (or low) strep titers.

Edited by EAMom
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Concur with others. Singer told me flat out three years ago that he did not believe PANDAS was real. That was the last time we went to Hopkins. I've not read the article though and perhaps this is their way to "admit" they might have been wrong without saying it.

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What caught my eye was "treatment with the most appropriate therapy." Could SOMEONE please define THAT????!!!! Authorities with a consensus opinion. That, to me, is the real issue and reason mainstream docs don't want to treat or believe in PANDAS, PANS or CANS. Whatever they want to call it this week. There's no research driven decision tree and treatment protocols. Need an algorithm to diagnose and follow for teatment instead of worrying about what to call it!

 

Just my 2 cents worth!

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Total (submit your favorite derogatory curse word here to describe ignorant docs)!

 

This article is just an attempt to discredit pandas, and the docs who treat. Sure they are saying, yes, many kids have acute onsets of neuropsych issues- but there are SO many causes- and since docs don't always hold to the criteria, lets just trash pandas, and throw all acute onsets together. And since they are all thrown together- we should be sure to ONLY treat for symptoms.

 

Cowards.

 

So they are agreeing there may be some pandas patients, but few, and they cannot be treated (appropriately) because we have no studies.

 

I concur with EAmom- I am very afraid of the autoimmune label going away. In our experience, our girls have an autoimmune disorder, and they benefit only from treatment for autoimmunity. The do not need daily antibiotics, and franky probably not prophylactic antibiotics. We tried SSRI for one, no response. What we get incredible response from are steroids or pex.

 

Unbelievable.

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Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. "

 

They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

Edited by LaurenK
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