Anyone Tested for NMDAR Encephalitis?

[Guest TwinCitiesMom]

Interesting article..."Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis in Children and Adolescents " from the Ann Neurol. 2009 July; 66(1): 11- 18

 

Many of the symptoms are very similar to our kids. Most of the kids in the case studies were diagnosed at CHOP. Looks like there is a blood test used to identify NMDAR antibodies. Since so many symptoms are similar to Pandas and SC, I am just wondering if anyone has been tested for NMDAR encephalitis.

[Wilma Jenks]

Never heard of it but will look into it. Would steroids help in regards to NMDAR???

[Kayanne]

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

[Guest TwinCitiesMom]

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.

[Wilma Jenks]

Can Ingenix do this test?

[PowPow]

Ihave asked our PANDAS doc about NMDAR encephalitis, as I thought it was a real possibility for my daughter. THe PANDAS doc said that my child would be physically much worse. I think she meant walking, talking, that kind of thing. Does anyone know if this condition does not always progress or can it kind of plateau at a certain level of disability? I uess I am asking,is it always physically disabling? My child is disabled by OCD and was disabled by psychosis at times and was severely affected by chorea-like movement.

She just had IVIg,but I still want her tested the next time we get labs.

[JAG10]

I thought PhillyPA posted about this guy, Joseph Dalmau was the guru on NMDA, but out of U of Penn, not CHOP (they're kissing cousins.) I also thought I remembered he wanted nothing to do with pandas... I'll see if I can find that post.

[JAG10]

See PhillyPA's post #10 in this thread

 

http://www.latitudes.org/forums/index.php?showtopic=12951&st=0&p=107743&hl=+joseph%20+dalmau&fromsearch=1entry107743

[Kayanne]

Can Ingenix do this test?

No. I think the only lab that is testing for this is at the University of Penn, and it is a spinal so it can't just be done at any lab.

Edited May 25, 2011 by Kayanne

[tpotter]

This totally blows my mind, given the fact that I took my (now) 18 yo DS to U Penn a few weeks ago, because of sudden onset tremors (he's already dx with PANDAS.) The neurologist was a pompous axxx, who when asked by my DS if she knew what PANDAS was, she responded: "I don't believe it exists" (I responded that he didn't ask if she believed it existed, but rather we were there, because of the tremors...she also did not care to get any research from me about PANDAS.) Additionally, we also tried to see a CHOP doc about the increasing "hard" neurological symptoms my DS 15 was having (new onset parkinson-like tremors, chorea, etc. I did NOT mention the term PANDAS, but he asked if I had heard of it. Then we got to talking, I told him about the treatments we had done (abx, IVIG and PEX), and the success rate with each for my DS. I also specifically told him what codes the docs were using (specific immune deficiency, and POST-INFECTIOUS ENCEPHALITIS.) Neither the doc at CHOP nor U-Penn mentioned anything about NMDAR Encephalitis, which was particularly interesting for my DS15, because I clearly told him that I suspected he might have strep in the brain, since the infection started in the ethoid sinuses.

 

It just seems terribly strange (although this keeps happening over and over again at CHOP) that one side doesn't know what the other is doing. BTW...the CHOP doc REFUSED to treat my DS, because "IT WAS TOO COMPLICATED!" He kept telling me to try Dr. E. (who we have seen, and that went nowhere) or the head of the neuro department at CHOP (why would I waste my time on yet another person at CHOP, when the neurologist we were seeing could easily have consulted with another member of his own department, and the department policy on treating PANDAS has always been: "see behavioral health."

 

So, I really, really don't understand why NMDAR Encephalitis was not even considered by either CHOP or U Penn. I guess one more reason to consider a lawsuit or class action lawsuit.

[Guest TwinCitiesMom]

From my google search I found two labs who mention Anti-NMDA receptor (NR1) IgG antibodies testing - Arup Laboratories and Athena Diagnostics.

 

The websites provide some good general info as well as more detailed technical info. Looks like serum or CSF is used for the detection of antibodies. The labs also mention other tests used for diagnosing limbic encephalitis. I am curious if anyone with pandas has had these tests??

 

In the case studies from the article it states that several of the patients had had similar episodes before the initial Anti-NMDAR diagnosis. How are these episodes different from some of the most severe pandas episodes? Many of these patients also experienced relapses after treatment and diagnosis.

 

Again, how is this different than pandas?

 

Parents of girl children may want to investigate NMDAR encephalitis caused by an antibody reaction to an ovarian tumor.

Edited May 25, 2011 by TwinCitiesMom

[Wilma Jenks]

Is this a spinal tap that is needed. If the treatment is similar to the PANDAS, why do we need 2 test 4 it????

[Guest TwinCitiesMom]

From my understanding, the antibodies may be detected through blood or CSF. The antibodies may be more concentrated in the CSF. The amount of antibodies may increase with an episode and decrease during remission. Kayanne posted some very good articles regarding symptoms, treatment, diagnosis, and patient outcomes.

 

I have a question. How would one know the difference between a very severe pandas episode and an NMDAR episode? Could you tell just by looking? It seems the diagnostic tests for NMDAR would be helpful in distinguishing one from the other? NMDAR encephalitis seems to be acknowledged and accepted as a diagnosis by more health professionals?

 

Is it true that a patient who has been diagnosed with NMDAR encephalitis has a better chance of getting treatment?

 

It has been said that NMDAR encephalitis is more common in children than previously thought. So who is getting tested?

[Kayanne]

Is this a spinal tap that is needed. If the treatment is similar to the PANDAS, why do we need 2 test 4 it????

To be sure you are treating your child for the right thing.

 

TwinCitiesMom,

No, I am not pursuing NMDA. My daughter is 100%.

Edited May 26, 2011 by Kayanne

[Guest TwinCitiesMom]

Yes, I agree.