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More on TX A&M Conference


tpotter
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I was waiting to make sure it was ok for me to write this, especially the way I write it. Norcalmom and I both mentioned that Dr. Cunningham had mentioned that they are now trying to start a new lab to provide the Cam Kinase test. It is called Moleculara Labs (Dr. C. just clarified it to me, because I wanted to make sure the information was accurate...I had written it down wrong.) She said that they are wanting to make the test commercially available through this lab when it is financially possible, and following all governmental regulations.

 

If you want more information about the blood test, I would suggest that you email Dr. Cunningham. In my opinion, this is big news!

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So does this mean that the CamK results "officially diagnose pandas?" Until now, even dr. c will say "we just don't know for sure" when specifically asked about this test. Is the Cam K now being accepted as an official diagnostic tool that mainstream docs will have access to?

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This is good news. Although my son's cam k number is the ONLY thing that makes me doubt his diagnosis. He was in normal range even though he has a classic presentation. I have often wondered though how the whole PITANDS thing figures into the cam k numbers? I know he reacts to more things than strep... but he does not show any indication of lyme on western blot. Except that band 41 that "almost everyone shows" (as I have been told).

 

Anyway... still great news that this will be more readily available!

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So does this mean that the CamK results "officially diagnose pandas?" Until now, even dr. c will say "we just don't know for sure" when specifically asked about this test. Is the Cam K now being accepted as an official diagnostic tool that mainstream docs will have access to?

 

 

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him)

 

I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in.

 

And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test.

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So does this mean that the CamK results "officially diagnose pandas?" Until now, even dr. c will say "we just don't know for sure" when specifically asked about this test. Is the Cam K now being accepted as an official diagnostic tool that mainstream docs will have access to?

 

 

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him)

 

I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in.

 

And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test.

 

Any thoughts on where to find her email address? Disregard found it on the PANDAS facebook page- thank you!

Edited by Sequin
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So does this mean that the CamK results "officially diagnose pandas?" Until now, even dr. c will say "we just don't know for sure" when specifically asked about this test. Is the Cam K now being accepted as an official diagnostic tool that mainstream docs will have access to?

 

 

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him)

 

I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in.

 

And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test.

 

 

Wow, that is interesting. DS's D1 was high and he has more psychiatric symptoms than neuro, although he had tics, hyperactivity, some movements. His D2 was normal. I also read somewhere that the antitubulin were somehow connected to tics and my DS's antitubulin was high, also.

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