Cam Kinase 179...does my child have PANDAS?

[trggirl]

My daughter has a CamKinase II of 237. Her anti-neuronals were normal. I spoke to Dr. Cunningham last year about it and she said something to the effect of "there were many, many anti-neuronals, not just the four that she tests". She said she felt that with the CamK so high, it was definitely indicating something going wrong and there might possibly be other anti-neuronals that were high. She just didn't happen to be testing the anti-neuronals that were key for us. Again though, I do want to emphasis that she did not say any of this as fact. It was just what she was thinking aloud as she was talking to me.

 

With all that said though, my daughter definitely reacts to strep. But she also had a downward spiral with flu last year so it it is not JUST strep for us.

[philamom]

saidie10----when Dr. MC wrote: "extremely elevated...you almost always NEVER see these types of numbers in children that are normal"--can you share what they were?

 

I've been told by an immunologist and neurologist that antineuronals are not indicative of anything for sure...that random "normal" people walking down the street can have them in their blood. Even our "pandas specialist" is not treating aggressively for our dd with a CamK of 168, high antilyso, and antiD1 4000 (4 times the mean!).

 

christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help?

 

Jag10---I like that statement by Philly! I think I took the "forcefully" part and ran with it.....

 

Hi...sorry I am just getting back to you. My son's D2 was 16,000. I really don't understand a lot of information about antineuronals, but I will tell you that when I was at the TX Symposium and asked Dr. C a question about my younger son (like the one I asked you guys here) when I mentioned the D2 of 16,000 she rolled her eyes as as if to say "my god that is high". So I believe that the antineuruonals are significant and mean something. Again, I really don't understand all the medical stuff, I just know that my son has stuff going on in his brain that is not right and these tests they did helped to indicate that.

When I had my dd's Cam K done in June 2009 her Anti D2 was 16,000. We are dealing with PANS (strep,lyme,bartonella).