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Dr_Rosario_Trifiletti

Propose a new name for PANDAS ... any ideas

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A parent recently told me that she didn't like the term PANDAS because it conjured up gentle, adorable, rarely seen bears.

 

PANDAS is not gentle and sweet, nor is it rare. We need something NASTY and COMMON

 

So I propose:

 

Streptococcal Immunopathy with Neuropsychiatric Signs

 

i.e. SINS

 

does anybody else have any suggestions - maybe wait for some holiday punch to kick in ....

 

 

Dr. T

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Hello

 

I also hate the PANDAS acronym and am in favour of something like SINS but wondered if it would be better if the acronym didn't already stand for something else. SINS, I imagine is very evocative for some people, as is PANDAS but not sure if an acronym that means something will detract from the disorder in some way or be bringing "baggage" to the table. Dunno?....

 

I like the idea of waiting for the alcohol to kick in for some inventive ideas :-)

 

Danuta.

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I like that the psychiatric has been removed!

Haven't had my holiday punch yet, but SINS sounds good to me!

 

Lets ask the kids !!! They are always good for an answer!!

 

 

Merry Christmas Dr.T

 

The Seratelli Family

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A parent recently told me that she didn't like the term PANDAS because it conjured up gentle, adorable, rarely seen bears.

 

PANDAS is not gentle and sweet, nor is it rare. We need something NASTY and COMMON

 

So I propose:

 

Streptococcal Immunopathy with Neuropsychiatric Signs

 

i.e. SINS

 

does anybody else have any suggestions - maybe wait for some holiday punch to kick in ....

 

 

Dr. T

 

I have been racking my brains out for months....this is actually really good. I little while ago I posted a poll, asking if the name should be changed, the response was more for a change...and then undecided.

 

http://www.latitudes.org/forums/index.php?...amp;#entry39153

 

The only problem that may be percieved with SINS is the fact that many of our kids are already dealing with irrational guilt because of the OCD....when my daughter was in her exercabtion, she would stand still at the school yard and not play. All we could get from her as an explaination, was that she thought it was a "sin".

 

She was recently able to tell us it was because she thought when she passed a child on the lot, it was "cutting in line"

 

Maybe we could move the words around to be NSS -- Neropsychatric Signs Caused by Strep

 

Of course, I think the doctors on the front lines treating this, Like you, should be the ones to decide.

 

Thank you for all that you have done, and are trying to do.

 

I hope you have a relaxing holiday....have a second punch for me!

 

~Karen

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Shame there hasn't been proved some definite link with the strep hyaluronidase 'cos we could call it

 

Streptococcus Hyaluronidase Induced Traumatising Encephalopathy.... shortened to S***E .. I haven't even hit the port yet but that ancronym certainly fits what we feel we've been through :-)

 

(hope this doesn't offend anyone)......

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I remember this being talked about before and it kind of fizzled out. To be honest, the acronym SINS doesn't settle well with me. What these children experience and do shouldn't be associated with the term "sinning", hinting they are controlling their actions. It may also make an older child think they are sinning. This would be really bad if they have a compulsion to confess, pray, etc.

 

What I have a problem with is PANDAS is so long. People tune you out by the time you get to "neuropsychiatric" and it just confuses them. Then they get really confused when I then start using words like basal ganglia. Now I just say brain.

 

I don't have a suggestion as a replacement right now. I think I like the word "autoimmune" being in there. I think most people understand that word.

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Okay, I haven't had any punch yet, but then again I probably can do this better with a clear head. My opinion on this is that there are some problems with the PANDAS acronym, but now that the disorder is gaining some much needed recognition and attention, it may be better to wait awhile before proposing a name change. Here is my thought. Kids with PANDAS often do have symptoms that make them act like bears but a panda is too cute a bear for this disorder, which we all know is anything but cute. Here is one suggestion: Brain Encephalophathic Autoimmune Response to Strep. The acronym BEARS is not so cute, so that works for me.

 

Ellen

 

 

A parent recently told me that she didn't like the term PANDAS because it conjured up gentle, adorable, rarely seen bears.

 

PANDAS is not gentle and sweet, nor is it rare. We need something NASTY and COMMON

 

So I propose:

 

Streptococcal Immunopathy with Neuropsychiatric Signs

 

i.e. SINS

 

does anybody else have any suggestions - maybe wait for some holiday punch to kick in ....

 

 

Dr. T

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These may not be too clever (no punch here....YET!) but how about....

 

 

Neuropsychiatric Autoimmune Disorder caused by Streptococcus

 

NADS

 

 

Neuropsychiatric Streptococcal Immunopathy

 

NSI

 

 

Neuropsychiatric Streptococcal Autoimmune Disorder

 

NSAD

 

 

Susan

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I actually like the acronym NSAD because it includes the word "sad". But it may be too much like NSAID. But then, NSAD is helped by NSAID's.

 

NADS...is that a women's wax product for hair removal?

 

I need some of that holiday punch....

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I'll tell you right now, my husband will NOT like the BEARS acronym. He's a Packers fan. Seriously, he'd freak out.

 

 

 

Okay, I haven't had any punch yet, but then again I probably can do this better with a clear head. My opinion on this is that there are some problems with the PANDAS acronym, but now that the disorder is gaining some much needed recognition and attention, it may be better to wait awhile before proposing a name change. Here is my thought. Kids with PANDAS often do have symptoms that make them act like bears but a panda is too cute a bear for this disorder, which we all know is anything but cute. Here is one suggestion: Brain Encephalophathic Autoimmune Response to Strep. The acronym BEARS is not so cute, so that works for me.

 

Ellen

 

 

A parent recently told me that she didn't like the term PANDAS because it conjured up gentle, adorable, rarely seen bears.

 

PANDAS is not gentle and sweet, nor is it rare. We need something NASTY and COMMON

 

So I propose:

 

Streptococcal Immunopathy with Neuropsychiatric Signs

 

i.e. SINS

 

does anybody else have any suggestions - maybe wait for some holiday punch to kick in ....

 

 

Dr. T

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I agree with the concern about SINS and irrational guilt. I can't imagine a kid wanting to be referred to as having "SINS" around parents, doctors, teachers. Especially when I'd like to see any stigma to this thing completely disappear! I think it needs to be cute enough, or neutral enough, that kids don't mind the label so much. Anything "nasty" is going to emphasize any feelings of negativity about their differences from other kids. And there is enough of that as is.

 

Also, I personally would like to see Streptococcal removed - and maybe something like "autoimmune" added. The autoimmunity seems to me to be more key than the Strep per se. I think that putting Strep in there might make it too narrow - already, I fear that too many pediatricians are failing to diagnose PANDAS because there is no confirmed strep just preceding it, even though I believe that 5th disease and many other things can set it off (esp after the first episode, which may well have come at an age when it wouldn't have been recognized.)

 

The acronym might not be pretty, but I would think maybe something like Infection-triggered Autoimmune Neuropsychiatric Syndrome (IANS). Of course, here on the West Coast, we haven't yet hit the alcohol very hard. I'll think again in an hour!

 

I am glad to see "Pediatric" removed! As a PANDAS adult, it is always strange to explain to doctors, etc., that I have a pediatric condition!

 

 

 

A parent recently told me that she didn't like the term PANDAS because it conjured up gentle, adorable, rarely seen bears.

 

PANDAS is not gentle and sweet, nor is it rare. We need something NASTY and COMMON

 

So I propose:

 

Streptococcal Immunopathy with Neuropsychiatric Signs

 

i.e. SINS

 

does anybody else have any suggestions - maybe wait for some holiday punch to kick in ....

 

 

Dr. T

 

I have been racking my brains out for months....this is actually really good. I little while ago I posted a poll, asking if the name should be changed, the response was more for a change...and then undecided.

 

http://www.latitudes.org/forums/index.php?...amp;#entry39153

 

The only problem that may be percieved with SINS is the fact that many of our kids are already dealing with irrational guilt because of the OCD....when my daughter was in her exercabtion, she would stand still at the school yard and not play. All we could get from her as an explaination, was that she thought it was a "sin".

 

She was recently able to tell us it was because she thought when she passed a child on the lot, it was "cutting in line"

 

Maybe we could move the words around to be NSS -- Neropsychatric Signs Caused by Strep

 

Of course, I think the doctors on the front lines treating this, Like you, should be the ones to decide.

 

Thank you for all that you have done, and are trying to do.

 

I hope you have a relaxing holiday....have a second punch for me!

 

~Karen

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I most like the ones Suzan has come up with, but have concerns with "nads" being short for gonads. Not sure if the kids use it in school these days, but they did when I went to school. Also, NASD is very close to some of those, and has another meaning.

 

How about:

 

Neuropsychiatric Autoimmunity from Strep

 

I also share the concern of whether it is the "right time" to try to change it. No strong opinion, but wondering about that. Would the name change bring attention? Would it just confuse the matter? One problem with the current PANDAS name is to have people learn about it, they will want to google it, and unless you know something else about it, all you get are the animals. For example, I will tell people to google PANDAS along with Tourette's or neuropsychiatric or neurological or strep, and that works, but none of those are easy things to remember or spell either, and again, if you don't know about the condition, you may not know to do that.

 

Michael

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I intended this to be tongue in cheek ...

 

I acutally like the PANDAS acronym - it's easy to remember and although long does describe the condition fairly accurately. The SINS idea was meant to be a bit of a joke; of course that's a horrible name for the innocent children who get this horrible disease.

 

The idea of streptococcal immunopathy, however is important. In many patients, there is either an over- or under-reaction to streptococcal infection; so one often sees a tendency in the personal or family history of "handling strep infections poorly". I really think there is a frequent abnormality in the anti-pneumococcal antibodies acquired after immunization in these patients that is very telling. In most cases, it's a selective immunopathy, not due to a detectable global problem in immunity. We know surprisingly little regarding the immune response to streptococcal infection and knowing more is the key to understanding PANDAS. So we need an "S-I"

 

We could drop the "pediatric part". It's very clear that this syndrome is more common in children than adults. However, we know that ADD is seen more commonly in kids than adults and we don't call the condition "pediatric attentional problem". Drop the "P". I also sense that the medical community takes adult diseases as more organic than children's diseases.

 

Another striking feature of "textbook" PANDAS is the sudden onset, i.e. Acute nature of the illness. Not every case has this, but this is part of the original Swedo criteria.

 

So one might go with ANSI - Acute Neuropsychopathy with Streptococcal Immunopathy. These kids are ANTSY, can't relax, etc. but this is not a pejorative connotation. We've removed the autoimmune business which many non-believers criticize.

 

 

 

Anyway, everybody enjoy your holidays!

 

Dr. Trifiletti

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