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Welcome to the Newsletter
January 9th, 2012

Dear Families, 


Here is wishing all of our family's a Happy and Healthy 2012!   I was discouraged at first having to write on this paper, "Moving from PANDAS to CANS"  by Dr. Harvey Singer, et al - first thing in 2012.  However, I've re-thought it realizing their inaccurate portrayal of PANDAS will only fuel parents and physicians who understand this illness to act more boldly to stop this devastating illness.  Month after month the news media is reporting on our victories.


In this newsletter, Vickie Blavat writes about the often confusing, invasive and inaccurate directives these doctors give on how to diagnose PANDAS.  Following this, I have written a summary of the basic points of the paper with my personal remarks.


The  paper states, "Although this disorder was conceived years ago, investigators at the NIMH deserve credit for formally establishing a set of criteria that could be critically evaluated."   In the paper they further want to include adults in the CANS diagnosis but offer NO treatment. 


Dr. Swedo and several courageous doctors have had success treating PANDAS. We have all been waiting for her White Paper about PANS (a new name for this illness discussed by Swedo and others for several months) and treatment possibilities. The PANS "White Paper" has been delayed for unknown reasons. Do these men mock the PANS name and call "their illness" CANS? It will only cause the medical community to shake their heads in confusion. This is good old boy antics, or is it juvenile antics?.... it is beneath the medical profession.


No matter, the truth is on our side.    There is an IVIG study underway, an azithromycin antibiotic study coming out soon, and studies pending on the blood brain barrier and more.  Thank goodness we have each other via support groups, phone calls and the internet.......we will heal and maintain good health for our children.


Best Wishes and Stay Strong, 

Diana Pohlman





 Commentary of
"Moving from PANDAS to CANS" Article 
By: Vickie Blavat

 In 2010, the NIMH hosted a think tank of various doctors and researchers to discuss PANDAS and its future. At that meeting, it was determined that a name change was in order and we would experience a shift from PANDAS to a new name...PANS. PANS would stand for Pediatric Acute-onset Neuropsychiatric Syndrome. To date, the new name has been verbally used by Drs. Swedo, Cunningham and others at conferences, symposiums and in layperson articles. They explain how various bacteria and infections, not soley strep, can trigger neuropsychiatric symptoms. We still wait for official confirmation and documentation of the change, diagnostic criteria, and treatment plans. One thing is definite, it was voted on and the name is PANS.


Imagine the PANDAS community's surprise when a new article surfaces from the often referred to "naysayers" of PANDAS. The article is entitled "Moving from PANDAS to CANS".  CANS?? Where did that come from? As Dr. Tom Insel stated in his blog, the above mentioned NIMH think tank "convened dozens of experts from the field-including prominent PANDAS critics to update the science and attempt to achieve consensus on criteria defining the syndrome". Some authors of "Moving from PANDAS to CANS" were those critics present. Then we read the article...


According to this article, published in the The Journal of Pediatrics, a new name for PANDAS is proposed by the authors. They deem it should be called CANS ( Childhood Acute-onset Neuropsychiatric Symptoms). Their CANS would be a very big umbrella for any person that has a sudden onset of neuropsychiatric symptoms, even if the cause is not infection triggered. Example, in addition to infection and autoimmune triggered events, if the cause for the sudden onset is drug induced (including illegal drugs like cocaine), psychogenic, metabolic, trauma, abuse, heavy metals, etc. the person can be diagnosed with CANS. The only prerequisite for a CANS diagnosis would be the sudden onset of symptoms. In other words, their CANS is a dump diagnosis.


The article goes on to say that one should do a battery of expensive tests upon the CANS diagnosis. We are all for testing, when the tests are appropriate, and starting with the least invasive. But the list of tests includes an urinalysis (probably for the illegal drug use they referenced), MRI's and EEG's, and spinal taps even on children as young as 3 years old. A simple in-office rapid strep test and culture in not listed. They list ASO and Anti-DNAseB tests, but also say one should not treat on the basis of one sample. Nor do they look for any immune deficiencies. They suggest in the clinical setting, tics should de-emphasized as a diagnostic criteria even though 80% of PANDAS children will exhibit motor tics. Overall, from time of onset to completion of all listed tests, it could be weeks or even months.


As for any treatment for their CANS, they explain to look for the etiology of the sudden onset and that determines treatment. That statement is as far as their treatment recommendations go. They suggest we do their battery of tests and if nothing is conclusive, to look the other way and do nothing to try to stop the intense suffering except for band aids of psychotropic medications, stimulants, tetrabazine (which cause high incidence of depression), clonidine, etc.  No suggestion to initial dosing or monitoring of such medication is cited which would be imperative as PANDAS children can have negative reactions and the treating physician needs to be aware of this possibility. We will only assume, for strep, they mean the high failure rate 10 day course of amoxicillin. Correction: they are not suggesting a rapid or culture (so an infection would not even be detected) or to treat for a rise in titers, so we suppose we don't have to worry about any strep treatment!


Looking at this article in sections, one may think this is simply another anti-PANDAS article, especially when PANDAS is put in quote marks and suggest completing eliminating the disorder all together. But when one looks at it as a whole, you begin to wonder if this is also a satirical jab at the shift to the new name PANS and the impending, new foundation of diagnosing and treating. We are open to the authors of  "Moving from PANDAS to CANS" to comment and elaborate on this.


If you are a parent of a PANDAS, PITAND or PANS child, we would like to know how your child would have fared if they had to follow the CANS outline. We will be glad to compile all your notes and send them directly to these authors.


For those that wish to read the article "Moving from PANDAS to CANS", it is unfortunately unavailable for free. PANDAS is unable to post the article due to copyright laws. One may be able to obtain a copy at their university's medical library.

Summary Notes of
"Moving from PANDAS to CANS" Article
By Diana Pohlman
Summary Notes from Jrnl of Pediatrics Jan. 2012: 
"Moving from PANDAS to CANS" , Singer et al.

Submitted for publication 8/29/11

Reprint requests of the original article:  Harvey Singer, MD, Rubenstein Child Health Bldg., 200 N Wolfe St., Ste 2158, Baltimore, MD 21287  email:


All notes are taken directly from the article.  The BLUE lettering is my personal remarks. 


Introduction:  Encountering a previously healthy child with acute, sudden onset of obsessive-compulsive behaviors, tics, abnormal movements, or other neuropsychiatric symptoms poses a dilemma for most physicians.... 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....we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology (infection or "other" cause) through appropriate laboratory testing, and treatment with the most appropriate therapy.


The Need to Move Beyond PANDAS:   ....[T]he major diagnostic criteria for PANDAS has been its temporal association with GABHS.  Nevertheless, there is strong evidence suggesting the absence of an important role for GABHS, a failure to apply published criteria, and a lack of scientific support for proposed therapies (papers cited saying there is "strong evidence against PANDAS"  are primarily by the authors writing this paper:  Singer, Gilbert and Kurlan).


Diagnosing a GABHS Infection:   The authors describe how difficult and confusing it is to diagnosis strep with a positive swab and that ASO and D-Nase titer analysis is confusing.


Temporal Association of a GABHS Infection with PANDAS:  In contrast to the initial event....recurrences of symptoms should occur within several weeks of a new infection. (This is a misinterpretation of the fact that symptoms usually do not entirely remit for kids with PANDAS....and any illness once the syndrome begins will create worsening of symptoms.)  Recognizing these considerations, problematic results of laboratory testing and antibiotic treatment are reviewed....


Tourettes, Tics, OCD and GABHS Association:   Studies have shown conflicting results and are not administered in enough detail. ....Several cross-sectional studies have reported higher ASO and DNASE-B titers in ....Tourettes...and (paraphrasing) several reports do NOT show a rise in ASO and D-Nase.


Two studies reviewed....US national health insurance samples have suggested that children with OCD, tic disorder, or TS were more likely to have had a streptococcal infection in the 3 months or year before the onset of neuropsychiatric symptoms.  The risk was higher in children with multiple streptococcal infections within a 1 year period.   (This is contrasted with two studies that looked at children who got  STREP INFECTION.  They were then followed to see if these were more likely to get OCD, TS, or tics disorders after the strep infection.....these people with strep infections did not get OCD, TS or tics.)



Is a GABHS Infection Associated with Recurrence of Tics, OCD or Both?   Infections did....enhance the predictive power of psychosocial stress in predicting future tic and OC severity.  (A long paragraph  follows detailing a 2008 study by Kurlan and Kaplan where their samples of children have been heatedly disputed.  In this study of 31 PANDAS children it was predicted they would have MORE strep infections....which is NOT what PANDAS is saying occurs.)


Does Antibiotic Treatment Suppress Symptoms and Does Prophylaxis Prevent Recurrences?  Anecdotes have suggested that the treatment of "PANDAS" with unspecified does of a variety of antibiotics improves symptoms and in multiple cases immediately, at the initial treatment.  This finding, however, has never been the subject of a clinical trial.  The biological explanation for the immediate response to antibiotics, if correct, is unclear.....(Regarding prophylaxis studies are too small and results unclear though few infections and neuropsychiatric exacerbations occurred).  Thus, as of this time, the use of antibiotics for secondary prevention of PANDAS appears unwarranted. 


Concerns about PANDAS Criteria:  The authors describe in detail that age limit should be removed; tics are common in 20-30% of children; and why look at OCD symptoms only as a critieria-other neuropsychiatric symptoms should be considered.  They further say that sudden onset is not defined well  and "saw-tooth pattern" is unclear in many reports.


Presence of Neurologic/Behavioral Abnormalities during Exacerbations:  Potential difficulties separating "choreiform" movements from chorea has led to suggestions that some cases might have had Sydenham Chorea.  Additional study is required to clarify .... co-morbid symptoms [for example] emotional lability, intense anxiety, cognitive-deficits, oppositional behaviors or motoric hyperactivity.


CANS:   Having identified significant limitation to the PANDAS hypothesis, it is suggested that this diagnosis be eliminated....Our suggested approach adopts a more encompassing concept of acute fulminant neuropsychiatric symptoms, but requires an active search for a specific etiology.  The proposed CANS classification does not require association with a specific organism, limitation of symptoms to tics or OCD, a specific age range, or recurrence of symptoms.  It does, however, require an acute dramatic onset, a comprehensive history and examination, and diagnostic evaluation. 


DIFFERENTIAL DIAGNOSES:  It is required to check the child for any of the below listed diagnoses:


TABLE includes 36 differential diagnoses:  Infection, Encephalitis, Metabolic/Endocrine Issues, Drug Induced, Toxic Ingestions, Trauma, Vascular, Autoimmune, Seizures, Psychogenic.  No mention of strep or mycoplasma, lyme or any other typical PANDAS onset illness is mentioned.


TABLE OF WORKUPS:  14+ blood tests, Urine Samples, Lumbar Puncture, Brain Imaging, EEG.


Idiotpathic CANS Where the above tests are inconclusive for CANS, this is idiopathic.  An ongoing uncertainty is how to classify an categorize patients with CANS who, after comprehensive examination lacks a specific etiologic diagnosis.  At this is unknown if this group will have a laboratory finding.


Therapeutic Approach:   Recommended treatments for OCD are SSRIs; for ADHD, stimulants, for chorea and tics..... dopamine antagonists.  Because the existence of PANDAS condition remains controversial, the routine use of antibiotics or immune-modifying therapies (corticosteroids, IVIG, plasma exchange) is not recommended.


Future Research:  It is strongly recommended that a national centralized registry be established for the collection of standardized and longitudinal information on this cohort... this will permit the performance of randomized, controlled, clinical trials of rational therapy.



Here is a pdf version of my summary.

Thank you for your ongoing encouragement.  



Diana Pohlman and
In This Issue
Commentary of "Moving from PANDAS to CANS" Article
Summary Notes of "Moving from PANDAS to CANS" Article
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