Autoimmune Encephalitis

[ibcdbwc]

Wow agnes26! Hope you get into see an AE specialist soon.

Edited February 10, 2014 by ibcdbwc

[qannie47]

I did the clock test, he did fine. However, he was not in a flare either. I am going to try and remember when the next flare comes. One thing that I do notice that physically, when it comes to doing right brain things my son struggles a bit. Gets mixed up. Ex: In karate, when he has to execute a move on his left side, even a simple kick, I can see him having to stop and really focus to get his body oriented. He gets all mixed up. I have seen this before with other things and I have always been a bit surprised because for athletics, it all comes very easy to him. So I wonder if there is a subtle right brain issue going on even when not in a flare.

[T_Anna]

DS15 tests positive for Hashimoto's Encephalopathy and Neurosarcoidosis. Dr. T has added many of the AE markers to his blood tests and we will be running them today on my other two kids along with all the other tests.

 

I agree with PowPow that there is a certain severity that comes with the AE + PANS afflicted child. It is the PANS+ that JoyBop has also mentioned.

 

Please keep in mind that a steroid burst and taper are very low doses when truly treating AE. We only saw microscopic improvements until we did PEX + 4 HD IVIGS + IV Steroid and 80 mg/day Oral Steroids.....

We are still FAR from functional, but there are many more glimmers. We hope to start CellCept within a week.

[T_Anna]

Here is a link of the blood test link:

https://www.dropbox.com/s/vlns07ydp6tpxwy/tests.jpg

 

 

DEFINITION OF PANS+

F. PANS-plus (more chronic complex disorders evolving from PANS)
a. With schizophreniform features
b. With primarily affective features
c. With anarthria
d. With anorexia
e. Almost always, an additional underlying illness
f. Possibly progressive

 

From Dr.T's Blog:

http://pandasinstitute.org/blog/2013/10/10-9-2013

Edited February 11, 2014 by t_anna

[tj21]

That's really good news Quannie. I am concerned if my son is going to need IVIG. Insurance does not recognize PANS or PANDAS as medical code. AE makes more sense if the antibodies can be found on the brain. However, these things are not always easy to catch either and many doctors are not open to that concept yet.

 

and @Quannie - is elevated auto-antibodies on the Cunningham/Moleculera panel enough for "antibodies found on the brain" ? Or are there more tests I should ask our ID MD to run? We're waiting for insurance approval (UHC/PPO) for IVIG but preparing for an appeal as well.