came across a couple interesting sites

[norcalmom]

What's the difference between PANDAS and all the other recognized autoimmune diseases? They have a test. MS has a test, NMDA encephplay has a test, RF has a test. None of the tests are 100% - all diagnosis also rely heavily on clinical evidence, as well as other supporting tests. And even witht he tests, it takes along time to get diagnosed. But for Pandas its near impossible - because we don't have a "test". But we do. And Swedo uses it. Why the heck don't pandas "experts" add the cunningham test to their arsenal when talking about diagnosing PANDAS? they all cite her work, and use it? Why does the NIMH site and even yesterday's Tweet Chat - overlook this test?

 

I'm bummed I missed the tweet -chat yesterday with Swedo, but I'm trying to get a couple questions ready for the Monday night Radio Pandas. I just read Brain on Fire, and it has me thinking about the similarities and the differences between NMDR encephalitis and PANDAS.

 

NMDA enceph. has a blood and and a CSF test that look very, very similar to the Cunningham tests. Yet even yesterday in looking at some of the tweet-chat tweets, the TOP name in pandas (Swedo) says there is no test for pandas. Not even a shout out to say there is a new test that can support the likely hood of your child responding to immune modulated treatments. And I know she believes in the tests, and I'm pretty sure the subjects in her current all get this test.

 

I came across a pretty cool page, and I've been to subsets of this site before when searching stuff, but never this high level view, so many of you may already know about it -

http://www.ncbi.nlm.nih.gov/sites/ga?disorder=PANDAS

 

It appears pandas is on the radar for Dr. Najjar, one of the doctors that treated the author of Brain on Fire. Here is an article I just printed to read. I did a quick scan and see pandas mentioned.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626880/

 

Also, take a look at the one page doc for the test for NMDA enceph test. Succinct and to the point.

http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/November2010/Anti-NMDA%20Receptor%20(NR1)%20IgG%20Antibodies.pdf

 

 

I wonder if high anti-NMDA antibodies will raise Cam K Ii levels? OR other disorders that are know to someone get through the BBB like MS. I think Cunningham scheduled to be on the Radio Pandas along with Brain on Fire Author Susannah Cahalan, but i'm not certain since this was a reschedule for a couple weeks ago. I hope so, because I've got a couple questions for her....

 

one last page I found when poking around. Here is a paper on tests for autoimmunity -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/

Edited May 10, 2013 by norcalmom

[Mayzoo]

My daughter's doc both mentioned it, and drew an extra vial of blood for when the test became available. I was excited about the possibility of this test; however, at a $925.00, we simply cannot afford this test, and I would suspect many are in the same boat. We have already done almost $1000.00 worth of blood and urine tests and we are not done yet with all the tests that must be run. Our daughter has been diagnosed unequivocally by clinical symptoms, so the test in our case, is unnecessary anyway.

[norcalmom]

Insurance should be paying for a lot of that $925. although, I do agree it seems high.

 

All lab work cost money (we usually only see and feel (ouch!) a portion of it), and it will be interesting to see which insurers pay what portion of the cunningham panel.

 

Its a drop in the bucket if you are thinking of doing IVIG - and mainly it predicts if your child has an immune modulated condition, and will benefit from IVIG. Dr K gives steriod bursts a lot - to see if child will respond to immune modulating therapies - its basically his version of a "cunningham" test.

[Mayzoo]

I requested the CPT codes for the tests, and they have not gotten back to me yet. With the codes I will find out how much the insurance will pay. I found out for the 255.00 urine test the insurance will reimburse 19.40. The lab is out of network and not held to MAC costs, so they charge a whole lot more than an in network lab can. My concern is the Cunningham test will be the same way, but I will not know until they respond with the cpt codes.

 

I am unsure if we are going with IVIG or not yet. I have many medical concerns about it. If we did, I would try to get it done in-network.

[T_Mom]

It appears pandas is on the radar for Dr. Najjar, one of the doctors that treated the author of Brain on Fire. Here is an article I just printed to read. I did a quick scan and see pandas mentioned.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626880/

Norcalmom, this article be Dr Najjar and colleagues is GREAT!!! I just wish I could understand half of it! (where is Buster when you need him?)

[T_Mom]

Look at this!!! Sounds like PANS--

http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html

[4Nikki]

Look at this!!! Sounds like PANS--

http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html

"He tested for a variety of rare antibodies, on the hunch that the girl might have some rare sort of autoimmune disease, in which the immune system attacks healthy parts of the body."

 

So how can i get our doctor to test fot these rare antibodies that attack GAD. DD has many of the same symptoms.

[norcalmom]

I think there are a number of just -beginning- to- be -recognized autoimmune disorders with psych symptoms. Vast majority of people are misdiagnosed and given psych meds, or locked up in pych ward. In the case of NMDA, result of misdiagnosis can lead to death.

 

NMDA looks an awful lot like pandas too. Many similar disorders like NMDA and GAD (whatever that is) would fall with in the PANS defintition - only NMDA is not pediatric specific. Happens to kids, but also adults.

 

There needs to be a better, bigger umbrella. Im sure a number of pandas kids are being misdx'd as well - no one ran GAD or NMDA tests on my DS, and he certainly looked like he could have had those - especially in the beginning.

 

I'd ask your doctor. Get your research and suspicions lined up and ask - I would think if its a pans or pandas doc they would run the test. I've asked for a number of tests over the years, I can't think of any requests that were denied. If they won't do it - try to find an immunologist or specialist in your area that may be familiar with the disorder and get an appointment there.

[nicklemama]

Good finds!

[jakio]

Dr Cunnigham will be speaking on the radio on Monday with some other doctors from Stanford.

 

Do you know the site?

 

 

Thanks