cunningham test

[norcalmom]

According to Kathy A and Dr. C, of the blood they test that comes up positive for anti-neuronals, aprox 45% is pandas. I emailed them in order to clarify the debate that their tests are specific to strep. (GABHS)

 

That leaves a whopping 55% to "something else" !

 

I think this is probably because people with a strong connection to strep don't need this test for confirmation that they have pandas. But whatever the reason, its clear that strep isn't the only thing making Cam K and anti-neuronals rise.

[eljomom]

maybe the other 55% is PITAND??? like us:)

funny, I was going to call her too...now i don't have to...

[eljomom]

oops, duh...just read the rest of the title to your post....guess you are saying the other 55% IS pitand?

[nicklemama]

Interesting. We are in the "other" category because my DS has never had a throat culture for strep. We don't know if its strep or something else. His titers are normal. We have a suspicion that he has strep in his sinuses but cannot prove that at the moment. We are going to have his pneumococcal titers checked to see if he's got immune issues. His IgG's are all normal, except subclass 4, which is high. Dr T said its due to allergies.

 

Cindy

[amyjoy]

i'm thinking more and more about PITANDS. We lump kids together for the most part as "PANDAS" when the symptom profile is right, with or without a positive strep test. but when strep is neg or no documented case of strep, strep can't really be proven or disproven. One PANDAS child in our office had a full blown re-ignition of symptoms following the reactivation of mono, a viral syndrome, with no rise in strep titer. Its completely confusing to me. i wish we knew more about how to test.

[norcalmom]

yes - you can't tell what the ORIGINAL trigger was in most cases. I can't prove my son had strep, but I can't prove he didn't have it either.

 

I really hope to see the cunningham test used for dx by it being one of the first things checked. And if it is high that could be cuased by one of the following and each should be checked for: active strep, active Lyme, post strep neuo-spchy disorders(pandas), Pitand, and what ever else she is finding ). This is very similar to a number of other autoimmune diseases.

 

I think the more important thing is it points you away from traditional OCD and tourettes drugs and therapies...and toward immune disfunction and infection investigation. (unlike the NIMH website, which says the opposite...gosh that just bugs the crap out of me every time I think of the hundreds of people, including doctors and insurance companies that look to that website as the most authoritative word on pandas)..

 

I CANNOT WAIT to see the name PANDAS go. The defining group for the study, and the name of the disease should not be the same - and until a large sample of adults have been tested and fully evaluated there is nothing that says that they can't have it as well. Its just easier to test the kids and make that association to strep. Where is that new name and white paper that was supposed to come in the fall anyway??

[SarahJane]

Read Osler's Web. It's a long, hard read but gives MUCH insight to NIH, NIMH & CDC...the whole of medical researchers really. Very, VERY interesting. Helped me understand more about the study of a new disease and how it all seems to work or not work, as the case may be. I'm SO thankful to the researchers who keep plugging away at this. I believe that their findings are going to be so far-reaching that it could be amazing.