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Should the PANDAS name be changed?


The PANDAS name  

14 members have voted

  1. 1. Do you think they should change the name from PANDAS to something else?

    • yes
      7
    • no
      1
    • I'm not sure
      4


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I would like for it to be changed, but I think if the name was changed right now it would cause more confusion with these doctors. If it was changed, it would have to go by both names for a long time and websites containing PANDAS info may become harder to find for people.

 

Didn't PANDAS go by PITANDS for awhile? Not many people searching now for PANDAS would know about that acronym. To be honest, I can't remember off hand. I only read about it once a long time ago.

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Just a quick poll to see how everyone feels...I'm just curious.

 

Thanks a lot!

 

 

Yes! Pandas is to much of a mouthful to try and explain. I'm thinking the name Diana told me they were trying to change it to was Autoimmune Encephalitis but I may not have that exactly right.

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I think it needs to be changed for several reasons - one - it's true that it's earned a bad rep with the mainstream medical community. Many feel it doesn't exist or those that do feel it is extremely rare and your child couldn't possibly have it or there is no cure.

 

Additionally, this is an autoimmune response that affects many children as a result of exposure to various antigens (not just strep). Therefore, it does have to be clear that this is something that causes encephalopathy regardless of the antigen.

 

However, I do agree that an abrupt change would confuse those parents who are just coming to understand the nature of this disease. It might be good to use the two names in conjunction for a while with a / in between the two words.

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That's exactly why I would support it getting changed, if it ever did. My son has reactions non strep too and that caused some problems w/ docs because of it. And it is a mouthful. People tune you out half way through the acronymn. It's a lot to weigh.

 

Do you think if got changed, some docs would say....see PANDAS never existed just to save their egos?

 

 

Additionally, this is an autoimmune response that affects many children as a result of exposure to various antigens (not just strep). Therefore, it does have to be clear that this is something that causes encephalopathy regardless of the antigen.
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That's exactly why I would support it getting changed, if it ever did. My son has reactions non strep too and that caused some problems w/ docs because of it. And it is a mouthful. People tune you out half way through the acronymn. It's a lot to weigh.

 

Do you think if got changed, some docs would say....see PANDAS never existed just to save their egos?

 

 

Additionally, this is an autoimmune response that affects many children as a result of exposure to various antigens (not just strep). Therefore, it does have to be clear that this is something that causes encephalopathy regardless of the antigen.

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Although I see the merit in all the reasons to change the name above, I opt for the less sophisticated route. I just cant stand the fact that every time I discuss PANDAS I think furry cute black and white bears? Who can take that as a serious medical condition? When ever I tell someone I notice they seem thrown off as soon as I mention the name as if they had to pause for the furry bear images!!

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After seeing doctors' eyes glaze over at the mention of PANDAS, I would vote for a change of name. The name simply has too much (undeserved) baggage and is surrounded by too much controversy and misinformation. E.g., "can't be that unless ASO / Anti-DNAse titers are sky-high after each exacerbation," "can't be that if antibiotics don't trigger improvement," "not proven," "no substantiating studies," "no effective treatments," "flawed hypothesis," "myth perpetuated by desperate parents," "not a useful diagnosis".... We've heard them all.

 

If it had been called (as others have suggested) "nontypical Sydenham's" or "a variant of ADEM" or "pediatric autoimmune encephalitis" - which are all derived from established, accepted diagnoses with known treatment options - that might eliminate a lot of pain and knee-jerk dismissals by doctors.

 

And one other point. When my son was first diagnosed and I started googling desperately, kept finding my PANDAS search results lists choked with links to zoos, biological studies, etc. As somebody mentioned, it's just an unfortunate choice of acronym - way too cute and fuzzy for a disorder that unleashes so much torment on children and families!

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