petie_tk

PANDAS VS. PITANDS

8 posts in this topic

What is the difference between PANDAS & PITANDS?

PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with strep. Many families have found that other things aside from strep can trigger their child such as virus, EBV, mycoplasma pneumonia and even lyme. PITANDS is for other infection triggered agents.

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Differentiating between Strep and Mycoplasma Pneomoniae or even Lyme is absolutely artificial and caused by methodological history nore than anything else and it is certainly about time the name of this condition is changed.

It is not Strep exclusive, Strep is not "superior cause" of it and it need not be pediatric.

 

Seems some parents are more obsessed with splitting the population into the real PANDAS and the less real ones than their children are made to be by the condition.

 

What I find dangerous is this obsession because it hurts and because there is so little information available to medical professionals in the publication realm, campaigns such as the Melony ones and claims alike can and had doctors reject non Strep cases.

 

For some reason people have a sick tendency to put their world into lockers and pigeon holes even when that may be harmful.

It can cause patients the denial of treatment!

 

We do not split cancer patients into more and less valid ones, even if the causes to that condition are highly varied and many still unknown. We do not tell man with breast cancer they cannot have it because they are men. but for some sick reason we do fight (on this forum) over the unjustified question of who is a valid patient suffering from this post infectious neuro-psychiatric autoimmune condition instead of investing our time into helping our children (mine is already 21) and those who treat them, and those who research the phenomenon, and to get the medical community and the general public learn the condition exists and has to be helped.

 

This condition is a post infectious neuro-psychiatric autoimmune condition.

 

Bathsheba

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People tend to use the term PANDAS generically - I think it is evolved to that.

 

MOST kids who start our as PANDAS quickly become PITANDS (meaning that the FIRST incident occurred because of strep - the second or third exacerbation could be anything - a cough, the flu, even a vaccine)

 

Since the acronym PANDAS was coined prior to discovering that other things like Lyme, and Mycoplasma could also be the cause the very first incident, it is natural that it evolve.

 

They are trying to replace it with the acronym PANS - which describes the symptoms more and the trigger less.

 

It stands for Pediatric Accute-Onset Neuropsychiatric Syndrome.

 

 

There are many other autoimmune disease - that can trace their initial trigger to a LIST of infections/or other triggers. For example several years ago I had a mild case of "Lichen Planus" its a skin disorder. I was told by the dermatologist that diagnosed me that in 50% of the cases it was linked to one of 3 things (so we had to test for those other things) - the things were - Hep C, Lupus, and get this - amalgam fillings. And it 50 % of the cases no cause could be identified. Since I had all of my fillings replaced (I had TONS- they were old and starting to break off) about 2months prior to the rash occurring, I'm pretty sure it was the amalgam. (I'm fine, it was mild, and lucky for me I had a case that was self limiting - it went totally disappered after about 3 years).

 

Swedo is presenting on it at a meeting in Boston in 2012 - and the description of the session reads:

"Although there is continued disagreement about the nature and etiology of PITANDS and PANDAS, (Pediatric Infection Triggered Neuropsychiatric Disorders; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, respectively), there is growing recognition that a subgroup of children with obsessive-compulsive disorder (OCD) are distinguished not only by the acuity of their symptom onset, but also by the presence of numerous comorbid symptoms, including emotional lability, anxiety, and motoric hyperactivity, among others. Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. In addition to these improvements in clinical care, the revisions promise to provide new opportunities for basic, translational and clinical studies of childhood-onset OCD and related disorders."

 

Here is a link to the PAS meeting in Boston that that talk takes place at (medical professionals only - so tell your docts about it!)

 

http://www.pas-meeting.org/2012Boston/Tracks/details_sessions.asp?det_sesstype=Topic%20Symposium%20&det_sessnumber=4320%20&det_sesstitle=Progressing%20from%20PITANDS%20and%20PANDAS%20to%20PANS%20(Pediatric%20Acute-Onset%20Neuropsychiatric%20Syndrome)%20&det_sessday=Tuesday%20&det_sessdate=5/1/2012%20&det_sessstart=10:30:00%20AM%20&det_sessend=12:30:00%20PM%20&det_sessroom=

 

Here is the DRAFT of criteria to be considered PANS- doesn't even mention Strep or the infectious trigger -

 

I.

Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here)

II.

Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description):

1. Anxiety

2. Sensory or motor abnormalities

3. Behavioral (developmental) regression

4. Deterioration in school performance

5. Emotional lability and/or depression

6. Urinary symptoms

7. Sleep disturbances

III.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

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I believe I read somewhere that Swedo said she's always known that there were other triggers. It was strep however that she researched and "proved" hence the name. On some level the name is indeed an obstacle because if you cannot "prove" a strep connection many doctors will simply dismiss the idea. As I watch the great parents pushing this effort forward I am in awe of their talent and determination. I do wish however, with all the media attention, we could highlight "PANDAS" but state that it is soon to be renamed PANS for reasons xyz. Interesting to also note that we NEVER hear about PITANDS in the media-- yet ironically it seems many of us do in fact fall into this category. PANS would be a nice umbrella.

My DS has strep as a trigger-- but it is certainly not the only one.

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Even if the name used is changed to PANS there is still a problem with Pediatric.

Sandra got ill at 15.5 and was sent to adult neurology for tests and they knew nothing and still, after 6 years do not know a thing about the condition (but the same must be said about the pediatric neuro here). What do you do with people who develop the condition at a later age and still fit the rest of the profile (which is best described as reacting badly to psycho medication but very well to antibiotics, steroids, IVIG and PEX)? AANS?

 

This petty name issue is far less essential than the fact that these people (is 21, going on 22, even if badly disabled by this condition a kid any longer?) should be correctly diagnosed and treated.

 

The "best" reasoning I heard from a pediatric neurologist turned psychiatrist way back in 2007 who diagnoed Sandra as suffering from anxiety (daaah, how easy it is to name one symptom as the condition... saying this could not be PANDAS because she was already 15.5 and therefore not pediatric and because she has always tested negative to strep (and besides he knew everything there was to know about this condition because he read all articles available) so he suggested she suffered from anxiety because 10 years earlier her older sister was bullied at school. Poor guy knew nothing about the subject, no idea of the infections (and why would anybody think of leaving them out???) and made poor Sandra take psycho medications that made her far sicker than she ever was and who knows what proportion of the current problems we have to struggle with are the result of his ignorance.

 

Bathsheba

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Interesting points. I do wonder often if this is a tip of the iceberg scenario. One could make the argument that many forms of mental illness may indeed have an infections trigger. Maybe we've been missing the boat all along. My aunt was a happy, successful, healthy young woman who had just completed college and was a clerk in DC. Literally over night she went crazy and became a raging schizophrenic. The rest of her life was ruined, battling the disease and the medication simultaneously. What if this were indeed an autoimmune type response? What if her own body was reacting to some trigger? Sad to think about in retrospect.

 

I wonder if they contain PANDAS/PITANDS/PANS to pediatrics for the same reason it was originally contained to strep. They need to keep the study groups small and tight and consistent in order to have reliable data. Or perhaps it is because with these particular studies, a percentage of PANDAS pts. did in fact go into remission after puberty-- thereby negating the possiblity of a post pubertal onset--at least according to the study? Is there ANY research being done for adults with OCD-- anxiety or otherwise?

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Swedo mentioned that cut off range for being "pediatric" is about 20. So, PANS is pediatric (20), but if you read the pandas criteria - pre-pubescent onset was part of that by definition.

 

Most people are exposed to strep numerous times before the age of 10, and after puberty most people have immunity to it. So, while this may cover 97% of all he pandas cases - I'm sure there are still some that don't meet this criteria. I think initial episodes can be misses. Kid could have had it at age 8 - but initial episode was not recognized as pandas. And next time they may be adult, or almost adult, or be one of those few that do not develop immunity to strep. There are always outliers, exceptions to the rule.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   30 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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