Anyone been tested for Anti NMDAR encephalitis?

[T_Mom]

Has anyone had their child tested for anti NMDAR encephalitis?

 

If so, can you please tell me the name of the test and if widely available? (ie., Quest/Labcorp, or does it have to be through a specialty lab?)

Thanks!!!

 

[PowPow]

ARUP labs (University of Utah?)

Athena Diagnostics

Mayo

 

U Penn will (or at least would ) do testing in their own lab, also, if you go to Children's Hospital Of Philadelphia . we had a neuro consult/ testing there a few years back.

 

I think Athena may only do blood testing.

CSF (from a spinal tap) is the most definitive, as there have been reports of negative blood tests and positive CSF.

 

I think ALL our kids should be tested for this.

[smartyjones]

pow pow -- do you have thoughts on when you say ALL on boys vs girls? do you know if a person is in a healthy state that they will show antibodies -- like the author of Brain on Fire -- would she show antibodies if tested now?

if you feel comfortable sharing -- does your daughter have the cyst issue? if you don't, that's fine -- not trying to be invasive, just curious in the discussion.

thanks.

[PowPow]

I guess I should edit that;)

Maybe not all kids but yes, boys, too!

I do not think that a kid who is doing well would have these antibodies, however, there is a case report of a girl who had a psychotic and raging episode, who was treated with psych meds and eventually recovered. A spinal fluid specimen was taken, but this was before nmda encephalitis was discovered. Years later she relapsed, a specimen was again taken and was positive for nmda.the initial sample had been archived, was retested and was positive! So, to me, this begs the question: did she truly relapse (though she was not treated appropriately first go-round) or was it just at a "tolerable" or subclinical level for the ten years or so between episodes?

My daughter does not have this. She has anti-RNP & antiphospholipid antibodies.

Edited October 10, 2013 by PowPow

[qannie47]

I have recently read quite a bit on this. I think this discovery might be the Tip of the iceburg. They are finding these antibodies in all different kinds of psyche cases from what I can tell, and it seems to be causing quite a stir. While mostly girls, and often ovarian tumors present, there are cases as well without tumors, and in boys. It appears that the psyche symptoms are present first, without any physical symptoms. I have not been able to find anything that correlates a time line for disease progression. But it appears, left undiagnosed, physical autonomic symptoms follow...but again, what is that timeline? They talk about patients having had diagnosed with schizophrenia, and other behavioral disorders that were present for years, with no other symptoms, and when tested, they are positive for these antibodies. When administered IVIG, plasma exchange, or steroid, all psyche symptoms have gone away....so what does that imply? It certainly strengthen our case with our DS, who responded beautifully to IVIG for 12 weeks....hmmmm.

[qannie47]

One other interesting thing I read, it appears that first symptoms seem to be viral, flu type infection. But if it started years ago, in some of these people, I can see where the connection would not have been made.

[rowingmom]

I have recently read quite a bit on this. I think this discovery might be the Tip of the iceburg. They are finding these antibodies in all different kinds of psyche cases from what I can tell, and it seems to be causing quite a stir. While mostly girls, and often ovarian tumors present, there are cases as well without tumors, and in boys. It appears that the psyche symptoms are present first, without any physical symptoms. I have not been able to find anything that correlates a time line for disease progression. But it appears, left undiagnosed, physical autonomic symptoms follow...but again, what is that timeline? They talk about patients having had diagnosed with schizophrenia, and other behavioral disorders that were present for years, with no other symptoms, and when tested, they are positive for these antibodies. When administered IVIG, plasma exchange, or steroid, all psyche symptoms have gone away....so what does that imply? It certainly strengthen our case with our DS, who responded beautifully to IVIG for 12 weeks....hmmmm.

 

In the papers you have read, have symptoms resolved and stayed that way, or do they eventually return?

[Dedee]

PowPow, Were those antibodies serum antibodies or spinal fluid? Sorry to be noisy. Very interesting information. Thanks.

 

Dedee

[PowPow]

not nosy at all. I am so glad to share and maybe get some suffering child/family on the road to healing.

These were just regular blood work.

Nothing fancy, really, just a good rheumatological battery of tests.

The RNP antibodies are associated with something called "mixed connective tissue disorder" which hopefully my daughter will NEVER develop (since she is receiving immune suppressants, steroids and IVIG). MCTD is an overlap syndrome, where you have lupus, scleroderma and polymyositis symptoms combined. That is a very serious, sad illness.

Anti-phospholipid antibodies are generally only an issue in pregnancy and pregnancy loss. I actually also have these antibodies (or had at one point) and when I am expecting, I take lovenox and aspirin to prevent undesirable clotting.

My daughter's doctor says that it is thought that the body simply make an autoimmune response to these bad antibodies and that is evidenced as PANS in my kid.

My other, now recovered, daughter just had all these labs done & we are waiting on results.

 

These tests were not the only ones she was considering for PANS symptoms, meaning that there were many other antibodies she checked for and were normal.

 

ask away!!

[rowingmom]

Sorry about this ( I can't help myself ) but I came across this blog post the other day, and your mention of polymyositis, brought it to mind, PowPow.

 

http://lymemd.blogspot.ca/2013/09/primary-lyme-myositis.html

 

"Results of tests: thyroid functions normal; rheumatoid factor and CCP antibodies negative; ANA elevated titer 1:160, speckled pattern; RNP antibodies, Smith antibodies, Antiscleroderma-70 antibodies, Sjogren's SSA and SSB negative, Antichromatin antibodies negative, Anti-Jo antibodies negative, Anti-Centromere B antibodies, ANA-D negative, dsDNA negative, Chromatin negative, SSA, scl-7 9 antiDNA topoisomerase negative, Centromere B negative, Jo-1 and nRNP negative, HLA B27 negative, RPR negative, Vitamin D normal, CK normal, Aldolase elevated (normal up to 7.6, result 13.8, CRP elevated 29.9. I apologize for some tests I omitted.

A test for Lyme disease showed an ELISA greater than 5, 10/10 IgG bands reactive and 2/3 IgM bands reactive.

A diagnosis of Lyme disease was made and the patient was treated with a three week course of doxycycline, 100 mg twice daily for 21 days. This was not helpful......

 

The patient was seen by me 5 months ago, after more than one year of diagnosis and treatment from a major University setting, without benefit. Further laboratory testing per me was remarkable for a C6 peptide greater than the assay is able to measure.

I diagnosed primary Lyme myositis, a relatively rare condition in my experience.

Moderately aggressive therapy was initialed with a combination of oral antibiotics.

After 8 weeks the patient was feeling much improved. The pain and swelling were gone. Fatigue was minimal and he complained only of mild stiffness.

After 8 weeks, aldolase ( a muscle enzyme) was in the normal range, 4.8. The CK remained normal. The ANA was entirely negative, slightly elevated before. The CRP was reduced from about 30 to 3.25(almost normal)....."

 

And finally, tongue in cheek:

 

" Note: A group of rheumatologists did an exhaustive workup covering the academic waterfront for every known rheumatologic disease. The pathology report supported this approach.

The patient had been appropriately treated for Lyme disease according to the IDSA guidelines adopted by the American Rheumatological Societies. Therefore, although the diagnosis was not clear and the patient had not responded to appropriate therapy; it was clear the answer was not chronic Lyme disease; a disease which does not exist as supported by experts in the fields of rheumatology, neurology, infectious diseases and evidenced based medicine based on peer reviewed studies published in the most prestigious journals."

 

Our LLMD suggests that DD's positive ANA speckled pattern "associated with mixed connective tissue disorder" is the result of her lyme infection and the affinity of borrelia for connective tissue.

[Dedee]

This is all very suspicious to me. One of the diagnosis that Dr. Murphy put for my daughter several years ago was "suspected connective tissue disorder". She did not have any of these tests done however and there was no follow up. I'm wondering if I can get our LLMD to order some of these. Also, we have a strong history of autoimmune thyroiditis which I would like to have her tested. Thanks so much for your help!

 

Dedee

[lfran]

Powwow-

 

Were you on lovenox when pregnant with your pandas kid? I was on heparin (older version of lovenox) for one of my pregnancies also because of anticardiolipin antibodies.

[PowPow]

No I was not. I was expecting her before the antibodies were found.