Anyone Tested for NMDAR Encephalitis?

[LaurenK]

We were just told that PANDAS is a cousin to anti-NDMA encephalitis and the root problem in PANDAS may be a microscopic tumor on the ovaries or testicles which somehow opens the blood brain barrier-- then any infection can set it off like strep, mycoplasma, etc.

[tpotter]

I don't know a lot about it, but this type of autoimmunity has been posted here a few times. I believe the test is a lumbar puncture that tests for the auto-antibodies. IMHO, it is certainly worth considering getting done because the treatments are very similar to PANDAS and if you get a NMDA-receptor encephalitis diagnosis insurance covers it.

 

Here are some other threads:

 

http://www.latitudes.org/forums/index.php?showtopic=8301&st=0&p=68425&hl=nmda&fromsearch=1entry68425

 

http://www.latitudes.org/forums/index.php?showtopic=7617&st=0&p=61949&hl=nmda&fromsearch=1entry61949

 

Thank you for the threads! The presentation of symptoms is very similar to pandas and the treatment is very similar. Both are caused by autoimmunity. Both seem to occur post-infection. Seem more similar than different, except NMDAR antibodies may be detected through a blood test. Just curious, how many pandas kids have been tested? Is it routine at CHOP and Children's Hospital of Cincinnati to administer this test to kids presenting sudden onset psychosis, personality changes, rages, chorea, insomnia, incontinence, hallucinations?

 

Don't know much about the blood test, but I do know it is available. Google it.

 

It is not standard practice, at CHOP, although I'm kind of surprised it's not. I know of at least 2 people on this board who's children are diagnosed. I hope they'll weight in.

[PowPow]

We were just told that PANDAS is a cousin to anti-NDMA encephalitis and the root problem in PANDAS may be a microscopic tumor on the ovaries or testicles which somehow opens the blood brain barrier-- then any infection can set it off like strep, mycoplasma, etc.

LaurenK,

Please, I am so curious. were you given any more info? did the person who told you this think that there was any difference in treatment or anything regarding occurrence (or preventing it?) My daughter was tested for NMDA and was negative. When she was tested a researcher who we consulted with told us that there could be an entire subset of related disorders, and as of right now they only know to test for NMDA receptor antibodies. Of course, the PANDAS treatment of high dose steroids, pex & IVIG is also the standard of care for NMDA-R enceph- so the next step for both if biologics and TNF inhibitors(which you will get for NMDA but most likely not for PANDAS, yet)

Any info you would be willing to share on the forum or on PM would be gratefully appreciated.

Thanks.

[LaurenK]

Our son just got admitted and we got it covered under encephalitis even though he supposedly has PANDAS. The neuro whom we are working with is very into the NMDA stuff. If you read this article http://f1000.com/8406956 it explains that there are varients of it and that PANDAS might fall into that category. our son just had 3000mg per kilogram over 3 days. he was very severe before now a week later he's almost back to normal. We had a tiny worsening before better. if I remember correctly, your child had steroids too? was it the same dosage? How long did the effects last? From reading I saw that one other person on this forum, PANDAS16, had the same treatment and it lasted over 10 years?? I have been trying to get in contact.

Edited March 3, 2012 by LaurenK