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.
Patrick;
I have received those newsletters from that tourettes organization for the last 25 years. They have yet to receive one penny from me.
And yes, even longer than 25 years it was considered to be genetic.
"Quincy" an old telvision show about a doctor that was a medical examiner who was always solving crime cases had a tourettes victim that was beaten up because he was making noises during a movie.Quincy made a plea to the government to help pay for orpan drugs.
There was another one too about autism --- I never heard of autism before, I was very young, and I kept thinking he was autistic. But the story was the child may have been non verbal, but was smart and well able to unlock the door and escape; which ended him up dead.
I cannot tell you the feelings that went through me, when my son was diagnosed with tourettes some 25 years ago -- surprise-- one more thing to add on to a very long and growing list of things that were wrong and --- this like all the rest on the list was genetic. GRRRRRR when I knew it all started with a reaction to a vaccine.
Posted by: Benedetta | January 27, 2012 at 11:56 PM
I hate to say it, but there is an organization that could be called tourette speaks.
A few months ago I got a letter from the organization that spoke of how excited they were about a study they did, but that they needed to recruit more people in the study to find a genetic bases for tourettes.
Posted by: Patrick | January 27, 2012 at 10:42 PM
I was born close to the leroy area and have significant info regarding this problem going on.i dont no who to contact.teresa please contact me
Posted by: Wendy | January 27, 2012 at 09:32 PM
I was born close to the leroy area and have significant info regarding this problem going on.i dont no who to contact.teresa please contact me
Posted by: Wendy | January 27, 2012 at 09:32 PM
If it was 10 girls who are not related... and then regressed into the tic and Tourette-like illness....it could be a new GENETIC disease that is sweeping the nation.
Have the "gene machine" people been brought in ?
Start a "Tourette Speaks" organization and start raising funds and then spend at least a decade "looking for the gene" before getting any other bright ideas.
Posted by: missouri | January 27, 2012 at 06:02 PM
Either neurologists should be trained to recognize the symptoms of poisoning or they should refer suspected cases to toxicologists. There's a huge disconnect in medical community as far as understanding symptoms of toxic environmental exposure which is why they fall back to a psychological diagnosis like "conversion disroder". I think stress is a factor in that it excaberates a real underlying health problem.
I hope Erin Brokovich is able to get to the bottom of this. Her team should test those athletic fields for chemicals and any cleaning products used at the school.
Posted by: Sarah | January 27, 2012 at 02:38 PM
The sad thing that has happened as a result of how these Leroy girls have been treated is that it exposes how, a very real gap in knowledge exists amongst neurologists. I mean why did they give up so easy and label it a diagnosis of exclusion? Wouldn't the professional thing have been to refer them on instead? Psychiatrists and most neurologists (not all!) are looking rather foolish right now and I say that whatever the environmental causes and interactions may be.
Posted by: Jen | January 27, 2012 at 12:40 PM
A couple of years ago my daughter after taking a series of Hep B and a flu shot had a psychotic episode. I found her cutting something out of her hand.
She has gotten better, she continues to work, drives a whole hour to work and then back.
she is on Lamictal a seizure medicine because she has seizrures in part of her sleep cycle, and Wellebutin. But she is doing fine.
Untill this Christmas. I found her running a temp of 103 and for three weeks she was OCB trying to pick at the scar on her hand scratching it, and squeezing it, trying to get the knot scar left from her previous episode out. Severe depression all set in at this time too.
I think that once you have screwed up the immune system with vaccines --- any virus, bacteria, pathogen that makes the immune system have to defend itself will bring on PANDAS, PANS or what ever.
And you can forget any help from the medical profession. It is no carbs -- and prayer.
Posted by: Benedetta | January 27, 2012 at 11:36 AM
My God and then they'll say, kids have had tics for ages, nothing new here, move on folks!
Posted by: Jen | January 27, 2012 at 10:30 AM
2-Methyl-4-Chlorophenoxyacetic Acid is a chemical (herbicide) that can cause tics-twitching:
Chemical poisoning --
2-Methyl-4-Chlorophenoxyacetic Acid is a chemical mainly used as a herbicide for field crops and turf. The type and severity of symptoms varies depending on the amount of chemical involved and the nature of the exposure. More detailed information about the symptoms, causes, and treatments of Chemical poisoning -- 2-Methyl-4-Chlorophenoxyacetic Acid is available below.
Review the available symptom checkers for these symptoms of Chemical poisoning -- 2-Methyl-4-Chlorophenoxyacetic Acid:
•Nausea -- Symptom Checker
•Vomiting -- Symptom Checker
•Abdominal pain -- Symptom Checker
•Headache -- Symptom Checker
•Weakness -- Symptom Checker
•Unconsciousness -- Symptom Checker
•Lethargy -- Symptom Checker
•Agitation -- Symptom Checker
•Coma -- Symptom Checker
•Leukocytosis -- Symptom Checker
•Muscle spasms -- Symptom Checker
•Rapid heart rate -- Symptom Checker
•Twitching -- Symptom Checker
•Seizures -- Symptom Checker
http://www.rightdiagnosis.com/c/chemical_poisoning_2_methyl_4_chlorophenoxyacetic_acid/symptoms.htm
Posted by: Sarah | January 27, 2012 at 10:29 AM
Looks to me like they just want to obfuscate things away from vaccines as possibly causal. Those people can rot.
Posted by: Jen | January 27, 2012 at 10:10 AM
I've alwalys wondered if energies (research) went into improving the immune system instead of manipulating it; where would we be? It appears as most believe that derugulation of companies polluting our air, soil and water is hindering our economy. In our economy and an election year it is politically incorrect to put the health of our children before jobs at a coal mine.
Posted by: Diane W Farr | January 27, 2012 at 10:09 AM
Teresa
Reminds me of the episode in 2005 when a UK parliamentary committee was putting pressure on the pharmaceutical industry over ghostwriting. Leading European medical ghostwriter and director of Dianthus Medical, Adam Jacobs, wrote to BMJ a letter entitled 'Let's abandon the term 'ghostwriting'' to which I responded with 'A ghost by any other name would smell as sweet'.
http://www.bmj.com/content/330/7484/163.1?tab=responses
They only want to confuse!
John
Posted by: John Stone | January 27, 2012 at 09:48 AM