Another Cam Kinase Question

[Tattoomom]

If the Can Kinase is negative, does that completely rule out PANDAS?

[P_Mom]

No

[Tattoomom]

No

 

But if it's positive, it definitely confirms PANDAS?

[sf_mom]

Test is still a study. You need to consider CaM results in conjunction with clinical picture.

[powerofprayer]

No

 

But if it's positive, it definitely confirms PANDAS?

 

 

I think i posted this before somewhere, but since your question is specifically one I asked Dr. Cunningham, i will copy her response here. When I asked her about my own low score (100), her respons was

 

"FOR THE LOW SCORE, WE CAN CONCLUDE THAT YOU DO NOT HAVE ANTIBODIES THAT SIGNAL NEURONAL CELLS THROUGH CAM KINASE IN YOUR BLOOD.

THAT IS ALL WE CAN CONCLUDE FROM THE LOW NORMAL SCORE."

 

When I asked her if my dd's high score (175) meant she IS a PANDAS case, her response was

 

"WE CAN CONCLUDE THAT SHE MAY HAVE ANTIBODIES IN HER BLOOD THAT SIGNAL NEURONAL CELLS AND MAY CONTRIBUTE TO SYMPTOMS.

WE CAN ALSO SEE THAT SHE IS IN THE PANDAS RANGE. PANDAS ALSO IS A CLINICAL ENTITY WITH ABRUPT ONSET AND ASSOCIATION WITH STREPTOCOCCAL INFECTION"

 

 

So i guess they are still unsure since this is still a study. the fact that she said my DD MAY have antibodies in her blood that signal neuronal cells tells me that there COULD be something else causing symptoms. Do y'all think I'm understanding that correctly?

[Tattoomom]

Test is still a study. You need to consider CaM results in conjunction with clinical picture.

 

And even though this is a "study", it still costs $400?!

[sf_mom]

Unfortunately, an unfunded study at the moment. Hopefully, that changes in the near future.

[EAMom]

blame NIMH for not funding Dr. Cunningham's research.

 

I would say that for most of this forum, Dr. C.'s tests have been consistent with symptom severity and have "confirmed" PANDAS. For us, the test results were enought to convince our immunologist to go ahead with IVIG (and insurance covered). Without those results, we would have had to travel to Dr. K. for treatment (from California).