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The Name Game

Posted Jan 01 2012 12:00am

The-Name-Game By Teresa Conrick

With tics and Tourette-like illness  in the news so much right now due to the increasing number of students at LeRoy HS in NY exhibiting them, it is with irony that P.A.N.D.A.S.,  a possible medical diagnosis for what we are seeing in LeRoy, is again up for scrutiny and denial somewhere else.  Here on Age of Autism, we are keeping up with the dizzying news that is our epicenter of what we are all about here - that many children are suffering with PHYSIOLOGICAL illnesses yet being wrongly diagnosed with PSYCHIATRIC disorders.  What is unraveling in Leroy has been happening for YEARS and for those of us with children stricken by regression after vaccination or immune illnesses, like PANDAS, the question that needs to be asked by many professionals denying what we all have known is - why are there so many sick children with immune and autoimmune diseases?

A few weeks back, a study came out , which wasn't really a study but more of an analysis steering an opinion. The name,  "Moving from PANDAS to CANS,- unavailable for public access -"  was quite a surprise as another name had been decided that would encompass the growing bacterial and viral issues of this increasing, medical misery - PANS," Pediatric Acute-onset Neuropsychiatric Syndrome."  PANS would change the criteia from the sole and hated Streptococcus bacteria to other various bacteria and viral infections, showing that not only Strep could trigger neuropsychiatric symptoms.  Vickie Blavat, a mother of an affected child with PANDAS and a research marvel on the PANDAS website, did a very nice job analyzing, "Moving from PANDAS to CANS" as well as other good information on this page:

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. .......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.

So it sounds like the doctors who are listed on this paper Singer HS , Gilbert DL , Wolf DS , Mink JW , Kurlan R   are establishing some sort of new criteria that does not make sense moving forward in helping these ill children.  Is it possible that like Autism, there are some folks in the psychiatric world, like in the development of DSM-5, who want to keep fighting the reality of immune illness versus mental illness in our children?  They keep trying to prove that their methods are the only treatments and that kids will get better with them.  Yet their their  big hitter medicines are proven  ineffective for a big piece of both Autism and P.A.N.D.A.S.--- REPETITIVE behavior
- A new multi-center study suggests the prescribed antidepressant  citalopram [ Celexa] is no more effective than placebo in altering obsessive features of autism

According to background information in the study, the use of antidepressants in children with autism spectrum disorder took off before there was strong scientific proof about its effectiveness.

In the last decade, its use has grown so that today more than 40 percent of autistic children swallow a daily dose of an antidepressant in an attempt to control spinning, rocking and repetitive behavior.

- These results showed that fluoxetine [PROZAC] was not effective for reducing repetitive behaviors in children and adolescents with Autistic Disorder.

Here was  a conference on OCD, tics and repetitive behaviors back in 2006.  Dr. Eric Hollander, the conference co-chair, in addition to promoting those now ineffective treatments for repetitive behavior - "From a pharmacological perspective, SSRI's are effective in decreasing repetitive behaviors and anxiety and improving global functioning in autism, similar to their effect in OCD,." there seems to have been a seed planted - a big seed to the money tree:

In opening the conference, Drs. Hollander and Zohar noted that distributed throughout the various sections of the DSM are a number of disorders which, like Obsessive-Compulsive Disorder, are characterized by repetitive thoughts or behaviors. These include obsessive-compulsive personality disorder (OCPD), hoarding (not currently in DSM-IV as a separate disorder but one of the criteria for OCPD), Tourette's and other tic disorders, Sydenham's and other PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), trichotillomania, body dysmorphic disorder, hypochondriasis, autism, eating disorders, Huntington's and Parkinson's diseases, impulse control disorder (e.g., pathological gambling), and substance addictions.

That's quite a lot of diagnoses neatly tied up into a ready-made solution according to Hollander then - " a pharmacological perspective."  So from that seed, there has been a continuation to try and keep many diagnoses, including Autism plus now PANDAS and related infection/autoimmune diseases in the wallet of DSM-5.  This from a 2010 article - "OCD and Its Treatment: Subtypes:" OCD and Its Treatment: Subtypes

Various subtypes of OCD exist. These include the early-onset, hoarding, "just right," primary obsessional, scrupulosity, tic-related, and pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS) OCD subtypes.....When OCD and tic disorders develop after an infection with Group A beta-hemolytic streptococcus, PANDAS is suspected. There is a waxing and waning of symptoms with this form of OCD. PANDAS is theorized to be caused by an autoimmune process. Some experts doubt the existence of PANDAS, while other clinicians use prophylactic antibiotic treatment to prevent it.[7].....Certain OCD subtypes that occur prior to puberty are being considered as independent syndromes for the upcoming DSM-V. These include tic-related OCD, early-onset OCD, and PANDAS.[7]

So it appears that in 2010, PANDAS  was being made into a market by considering its placement into DSM.  Since PANDAS is related to Streptococcus and other bacterial and viral infection triggers  the fight to keep these immune diseases in the dusty, archaic, "CONVERSION" filled DSM , is happening right before our eyes. There is much money to be made if the continuation of treating autoimmunity as a psychogenic, hysteria neurosis rather than a true medical disease, needing immune modulating treatments, therapies and hope.  Money on drugs, shown to not be effective, or doctors who deny real physiological pain and real science, will  hopefully become a thing of the past.

We look to LeRoy with hope that these sick children, and so many more, will get the correct diagnosis and treatments -- finally.

Posted by Age of Autism at January 27, 2012 at 5:45 AM in Teresa Conrick Permalink

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