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Dr_Rosario_Trifiletti

Propose a new name for PANDAS ... any ideas

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In the spirit of Dr. T's "tongue in cheek" intent, how about Pediatric Autoimmune Neuropsychiatric Encephalopathy... because this thing has caused more PANE to our children and families than most people can comprehend! :huh:

 

More seriously, now that PANDAS is finally getting media attention and publicity, I think we're better off sticking with the (unfortunate) fuzzy bear acronym. Don't want to confuse the issue.

 

Happy Holidays, Dr. T and everybody!

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I thought about that too!

 

Pediatric Autoimmune Infection-triggered Neuropsychiatric Sydrome (or Disoder)

 

PAIND

or PAINS

 

Too negative, but funny how well it fits!

 

 

In the spirit of Dr. T's "tongue in cheek" intent, how about Pediatric Autoimmune Neuropsychiatric Encephalopathy... because this thing has caused more PANE to our children and families than most people can comprehend! :huh:

 

More seriously, now that PANDAS is finally getting media attention and publicity, I think we're better off sticking with the (unfortunate) fuzzy bear acronym. Don't want to confuse the issue.

 

Happy Holidays, Dr. T and everybody!

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I actually laughed when I saw this thread. I get that it was tongue-in-cheek, but think a lot of the controversy in PANDAS came from trying to simultaneously:

  • Name a syndrome (i.e., the collected symptoms)
  • Name the disease (i.e., the pathogenesis or physical dysfunction)

The "Associated with Streptococcus" was sort of caught between the two -- it was part of the symptom but also seemed to imply a pathogenesis.

 

Known:

  • Pediatric -- hard to doubt that one (although syndrome may be broader)
  • Neuropsychiatric disorder -- clear obsessions, compulsions, tics, choreiform movements

Good evidence:

  • AutoImmune -- kids do better post IVIG, PEX or after pred burst
  • Diapedesis -- anti-neuronal antibodies in the CNS fluid (T-cell breach of blood brain barrier?)

Mounting evidence:

  • Associated with elevated serum CaM Kinase II activation - Kirvan 2006
  • Associated with Streptococcus -- Yaddanpudi
  • CaM Kinase II activation due to antibody to GABHS -- Kivan 2003, Kirvan 2006

The problem right now is that even with Kirvan's/Cunningham's work on CaM Kinase II activation, it is unknown whether the CaM Kinase II is the problem or a byproduct of some other effect -- i.e., the pathogenesis isn't totally worked out.

 

So, strangely, perhaps we should call it PANIC -- Pediatric AutoImmune Neuropsychiatric disorder Involving CaM Kinase II activation -- of course we'd have a worse time with Google :)

 

Or perhaps PANDIC :)

 

Of course, PANDAS still works fine... we just need to get the NIMH funding to replicate experiments and continue the pursuit of the pathogenesis....

 

Regards,

 

Buster

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So, strangely, perhaps we should call it PANIC -- Pediatric AutoImmune Neuropsychiatric disorder Involving CaM Kinase II activation -- of course we'd have a worse time with Google :)

 

or PANICK (add in the "K" from Kinase) so when people google it is a more unique word...

 

regarding the "P" (pediatric)....I'm okay with leaving it in if people could understand that it means primarily pediatric onset (vs. exclusively pediatric...which is how the "pediatric" often gets interpreted).

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How about we leave it as is for now. The public is confused enough already.

 

I agree. And I know this isn't the popular opinion here, but I like the name PANDAS because to me, for my 6 year old son, it is a name that is familiar and safe. My little PANDAS boy. It is affectionate, and when he flares up, I just look at my sweet boy and somehow the name PANDAS conjures up an image that is sweet and safe... even though he is struggling so much. I don't know how to explain it. I have felt such intense sadness when he was at his worst. He doesn't know what he has yet, but he has heard me talk about PANDAS, and it is a name that is safe and familiar to him, so he doesn't think anything of it. Maybe he just thinks I am talking about the animal. Anyway, I don't like the psychiatric part either though.

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