Summary from AE Symposium 2014

[PowPow]

https://aealliance.org/international-symposium-on-autoimmune-encephalitis/

 

 

and the actual document:

 

https://aealliance.org/site/wp-content/uploads/2014-Symposium/2014-AEA-Symposium-Final.pdf

 

Hope someone finds this interesting, exciting and helpful! I sure did

[pr40]

do you happen to understand exactly what the difference btw encephalitis and pandas/pans is?

is it just the intensity? when it gets to that stage described in the brain on fire, drs seem willing to call it encephalitis and do ivig. but when symptoms are tics and ocd, then, it is pandas?

I could not find a better explanation -- I mean, given that encephalitis does not have a precise definition, if I understand that one correctly.

is it that pandas is about a different part of the brain?

[Hrosenkrantz]

I don't really know the answer, and I'll be interested in response to this thread.

 

But it had been explained to me that pandas is believed to be treatable w abx and steroids. If the kid doesn't get better, perhaps it's something else?

 

Also, for AE, doesn't there have to be the presence of certain bad antibodies, or markers?

[PowPow]

here is my opinion.

I feel like I could write a book on this (on my opinion of it!)

I think PANDAS/PANS is a subset of AE. maybe milder, maybe not, depending on the kid. My thinking on this is that my two oldest daughters were both severely affected by PANS. Severely affected- both had pex and IVIG, etc.. One was clear cut PANDAS (by definition and Cunningham test) The other, no strep, cunningham was borderline for CaMK. That daughter was diagnosed with anti-phospholipid syndrome and AE. Their presentations were nearly identical in symptoms, onset, etc. You could not convince anyone that they had "different" disorders. I think it is simply how it is termed.

That being said, I have two other children with much milder symptoms, some tics, some psych symptoms. I would not call them AE- though, they are not that severe, but I think the same mechanism is at play. steroids help. Cunningham test positive, though no correlation with strep, specifically.

Also, I think in the link I posted and in the Pediatric Inflammatory Brain Disease paper I referenced in an earlier post (I can email a pdf copy to anyone interested) states there does not have to be specific antibodies identified, but I do think they look for markers of general autoimmunity.

 

and I agree that PANS should get better with steroids or perhaps long term abx (for inflammatory issue). If not, then yes, I think it would fall into a different category. This is where I think the never ending search for an actaul infection departs from just trying to calm inflammation that may not have a definite or current cause.

 

As far as tx and semantics, pr40- yes, I think intensity sets the stage. My daughter with AE gets the works at a nationally recognized AE center, and my ticcer goes to a PANDAS doc for steroids and long term abx. If I took her to the Neuroimmunology Clnic for tics, I think I would get the ol' "tics are not necessarily a sign of a problem" or "lots of kids have tics".

 

make sense?