camk score in

[powerofprayer]

Now, there was one poster here who was an adult and got tested also, and got a more "normal" score, so, I'm not quite the only adult tested. But, still, it was just treated like the kid samples. That's the thing, you really don't know how adulthood could change the score, but, the score does seem capable of being PANDAS or normal

.

 

Yes, that was me.....my CAMK score was just 100 , so very "normal". So your high CAMK just blew my "theory" out of the water that PERHAPS the CAMK regulates into adulthood even though symptoms still persist.

 

This question has been on my mind awhile, "How many people believe the PANDAS dx just based on the CAM score?" I ask because when I questioned Dr Cunningham about my dd having PANDAS b/c of her Cam K being 175, her reply 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"

 

Her response doesn't sound like the PANDAS dx can be real conclusive simply based on CAMK score. Is the research just still too new to determine that?

For us there wasn't an abrupt onset nor has she ever been dx w/ strep. Thus, my confusion and indecisiveness on how to proceed. We are currently stationed in somewhat of a "backwoods country location" so I am leary of even bringing up the suggestion to strep test her and proceed w/ abx, "just to see what happens".

[MichaelTampa]

powerofprayer,

 

I would definitely be looking for behavioral symptoms as well before considering PANDAS too much. But, the strep diagnosis and immediate onset, I don't know about that. I don't have either of those myself, but I haven't gotten to a PANDAS doctor or treatment yet, so we'll see what the docs say about that. But, I was sick a lot as a child, and in many instances did not go to a doctor. And what about producing antibodies but not getting the real infection because it is a minor exposure that the body kills? I don't look at a strep diagnosis as that important, just my opinion here, of course. Regarding the immediate onset, it would be nice to see it for clarification ... but, would it really be noticed at age 18 months, or just seen as a development issue? I don't have kids, so can only ask the question, not answer it, but, just wondering, would a parent really know and see that as immediate onset?

 

Michael