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I talked with Kathy about this. She said that Dr. C's father is quite ill. I would imagine that that is taking a lot of her time.

 

Kathy also said that you can basically compare your numbers with that of the normal mean in order to get a sense of where your child falls on the range, and look at where the cam Kinase falls on the scatter plot in the journal article that she sends out with the email results.

 

I hope this helps.

 

I have not gotten my mailed report either.

Brandy

 

It has been two months for me. Still no report.

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Late getting in on the conversation here, but the Cunningham study did show the CamK differentiates PANDAS kids at least somewhat from OCD kids and kids with tics (TS?) and ADHD kids. But, it could be a more generic marker for infection related problems, or autoimmunity problems. It could be that PITANDS patients generally have high CamK too, and same thing with lyme patients. That's why I'll agree, getting the test FDA approved would be great, but, for it to be really diagnostic of PANDAS, some research on those with other infection-related autoimmune-related problems would be in order. It would be a shame for someone to consider the test diagnostic of a strep autoimmunity when it was some other infection they had.

 

Michael

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Add me to the list too. We sent ours in yesterday. My son is not in exacerbation. Dr C recommended waiting until one hit. But time goes by while I wait, and my real question is, is his baseline good enough? Of course if he has another major exacerbation we will pursue the IVIG or PEX. In the interim, he is very functional, outwardly appearing happy and normal, but, he cannot stand to be in a room with me if I am eating or swallowing anything (this includes saliva) and he has some minor tics and compulsions, and I think he has some academic issues too. And of course everytime he gets a virus I think we are heading toward another exacerbation.

 

Do any of you know of kids that scored low and were still considered pandas (and helped by steroids and IVIG?)

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I received the packet in the mail today.

 

I haven't received anything in the mail either. I will post if I do.

 

just wondering if any of you have gotten a written report from Dr. Cunningham? Is that what we are suppose to receive? I rec'd emails one about what the camk score was and one about the titers but no explanations. Anyone have any info on a final report that might be on its way?

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thanks for update

 

 

I received the packet in the mail today.

 

I haven't received anything in the mail either. I will post if I do.

 

just wondering if any of you have gotten a written report from Dr. Cunningham? Is that what we are suppose to receive? I rec'd emails one about what the camk score was and one about the titers but no explanations. Anyone have any info on a final report that might be on its way?

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It didn't really tell me anything differently than what I already knew from the email they sent earlier. It was a handwritten note outlining the results. She did include the article, "Mimicry and autobody-mediated neuronal cell signaling in Sydeham Chorea" which I hadn't seen so that was helpful.

 

thanks for update
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Got mine too!!!!!

 

 

It didn't really tell me anything differently than what I already knew from the email they sent earlier. It was a handwritten note outlining the results. She did include the article, "Mimicry and autobody-mediated neuronal cell signaling in Sydeham Chorea" which I hadn't seen so that was helpful.

 

thanks for update

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