GraceUnderPressure Posted January 14, 2011 Report Share Posted January 14, 2011 (Is it even necessary for me to say how terribly frustrated we are over here? Or is that redundant for those of us who frequent this forum? ) Anyway, ds18's Cunningham results appear to be negative? His CAM Kinase was 146 Anti-lyso 160 Anti-tubulin 500 Anti-da 1 2000 Anti-da 2 4000 I am SO sure that my son's tics are related to a dysfunction of his immune system because of his issues & the things that cause him to get worse, etc - so do these results mean it is not? And I thought someone posted recently about using the "normal mean" to interpret the results? But I keep searching for that thread & can't find it. Can't find previous posts explaining how to interpret the numbers either. ARGH!!! Can someone here help me with some info or point me to the right place that I'm apparently too brain damaged to find today, please? ~Grace Link to comment Share on other sites More sharing options...
PhillyPA Posted January 14, 2011 Report Share Posted January 14, 2011 A Cam score of 146 doesn't seem negative to me. That is positive for pandas. Link to comment Share on other sites More sharing options...
kimballot Posted January 14, 2011 Report Share Posted January 14, 2011 I don't think 146 is low either. In the Cunningham article, there are NO normal human subjects nor kids with tics nor kids with OCD who are over 140 (scatterplot 3a & 3b). In fact, the line across in the scatterplots is the mean and it looks like the mean for PANDAS is right between 140 and 150... so your son's looks like it is right in the middle of the PANDAS range. Also - if you look at the bar graph in figure 3a you will see that the red is Cam Kinase activation while the kids with PANDAS are in exacerbation and the blue is when they are not in exacerbation. Only one child (p15) with PANDAS was over 140 when not in excerbation, and that one looks like he/she may have really been in an exacerbation still as the level is the same as when he/she was in exacerbation. So.. it looks to me like your son's cam kinase is in the PANDAS range and in the PANDAS exacerbation range... Even though I know this is NOT a scientific / FDA approved test.... it is just a research study. Link to comment Share on other sites More sharing options...
Megs_Mom Posted January 15, 2011 Report Share Posted January 15, 2011 I agree - we had a CamK of 133 (tested at end of exacerbation & after abx already started) and have responded classically to PANDAS trestment. We did have a much higher Anti-lyso, but you beat us on the CamK. Seems positive to me as well. Link to comment Share on other sites More sharing options...
peglem Posted January 15, 2011 Report Share Posted January 15, 2011 Email, Kathy Alvarez or Dr. Cunningham. They will help you interpret. Link to comment Share on other sites More sharing options...
eljomom Posted January 15, 2011 Report Share Posted January 15, 2011 I don't know that these results really change how any of the docs are treating kids??? Our pandas doc said the CamK was not of as great interest to her (Cam K was 168!!!) as the anti-neuronals would be when we got them back. I go over and over and over and over this in my head every day.....STILL can't totally wrap my head around what these results mean. And also, when I do have a brief a-ha moment, I think they indicate very different things. CamK indicates inflammation (cytokines) ??? and anti-neuronals are the auto-immune part??? Is this waaaay off?? Link to comment Share on other sites More sharing options...
peglem Posted January 15, 2011 Report Share Posted January 15, 2011 I don't know that these results really change how any of the docs are treating kids??? Our pandas doc said the CamK was not of as great interest to her (Cam K was 168!!!) as the anti-neuronals would be when we got them back. I go over and over and over and over this in my head every day.....STILL can't totally wrap my head around what these results mean. And also, when I do have a brief a-ha moment, I think they indicate very different things. CamK indicates inflammation (cytokines) ??? and anti-neuronals are the auto-immune part??? Is this waaaay off?? I think the camKII activity is elevated as the result of the anti-neurals, and indicates dysregulated neurotransmission. Link to comment Share on other sites More sharing options...
GraceUnderPressure Posted January 15, 2011 Author Report Share Posted January 15, 2011 (edited) This is so confusing! According to the positive & negative controls and the ranges provided by Dr. Cunningham's lab, my ds's numbers are at the middle to high ends of normal. Does this just mean our results are inconclusive one way or the other then? How do I contact Kathy Alvarez or Dr. Cunningham? Edited January 15, 2011 by GraceUnderPressure Link to comment Share on other sites More sharing options...
kimballot Posted January 15, 2011 Report Share Posted January 15, 2011 This is so confusing! According to the positive & negative controls and the ranges provided by Dr. Cunningham's lab, my ds's numbers are at the middle to high ends of normal. Does this just mean our results are inconclusive one way or the other then? How do I contact Kathy Alvarez or Dr. Cunningham? Hi Grace - Did Kathy Alvarez email the results to you? If she did she probably included this article: http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf That is the article that you should use to understand the Cam Kinase II results. Figures 2 and 3 (especially figure 3) help you to see where your child's camkinaseII activation levels are - and your child's are right in the middle of the PANDAS range. Here is a discussion with Buster's input on cam kinase II that may help you understand it better http://www.latitudes.org/forums/index.php?showtopic=11662&st=0 Now - the antineuronal antibodies are another story completely. Yes - according tot he positive and negative controls your son is at the middle to high end of normal. I think my son was elevated above normal in only one of these (can't remember exactly right now). We don't know exactly what those are telling us. There are no studies published about that yet. We can guess that your child did not have elevation in antibodies that affect those specific receptors... but we really do not know what that means. That is part of her current research. Here is a discussion with Buster's input that might help you with understand that better http://www.latitudes.org/forums/index.php?showtopic=8214&st=0&p=67663&hl=dilution&fromsearch=1entry67663 I will PM you with Kathy's email in case you don't have it. She will be able to help you more. Link to comment Share on other sites More sharing options...
GraceUnderPressure Posted January 16, 2011 Author Report Share Posted January 16, 2011 Thank you so much! I got the pm info as well! I thought you might also be the one who had posted about Cunningham's explanation of "normal mean" - was I mistaken? Link to comment Share on other sites More sharing options...
kimballot Posted January 16, 2011 Report Share Posted January 16, 2011 Thank you so much! I got the pm info as well! I thought you might also be the one who had posted about Cunningham's explanation of "normal mean" - was I mistaken? Hmmm... I am not sure if I posted that, but if I did, I learned it from Buster and others on this forum... whatever it was. Link to comment Share on other sites More sharing options...
PhillyPA Posted January 16, 2011 Report Share Posted January 16, 2011 I think it was P.Mom who posted the explanation... By the way my 6 year old son,following a sore throat, started getting OCD and would not eat because he thought he was going to choke. He kept spitting out all of his food. His Cunningham test was normal except for a CAM score of 137, which is only slightly elevated. This past summer, he was treated with antibiotic and a month long steroid burst and is currently doing great. He was diagnosed with Pandas even though his scores were low. Link to comment Share on other sites More sharing options...
lynn Posted January 17, 2011 Report Share Posted January 17, 2011 DS had a cam kinase of 149 (mean for PANDAS is about 150,) which I took as positive. 3 of 4 of his antineuronals were at the top of normal. I emailed Kathy Alvarez and she said that the antineuronals were in fact significant because they were way different from the mean. If you search on Buster's posts, there is one in which he describes the dilution factors and how they actually get that number--very interesting. Link to comment Share on other sites More sharing options...
nicklemama Posted January 17, 2011 Report Share Posted January 17, 2011 My DS had a CamK of 144. His antitubulin was high, the D1 was at the top end of normal. When I looked at the chart provided by Dr C, 145 seems to be the middle of the PANDAS range. She has since come out w/ newer "levels" of CamK and DS is in the "lower PANDAS range from 135-155" and I'm quoting that range directly from the parent letter she sent out w/ the results. I received my results just last week. Cindy Link to comment Share on other sites More sharing options...
GraceUnderPressure Posted January 19, 2011 Author Report Share Posted January 19, 2011 Thank you, Kim, and everyone else who posted! I finally sent an email to Kathy last night (as you can see from my other post "Rubella?" we've been pretty occupied) and she emailed me right away this am. She verified what you all are telling me - my ds's CAM of 146 is just under the median range & his da 1 is twice the normal mean. She said that would indicate PANDAS/PITAND providing the clinical picture is consistent with that. Dr. Cunningham's "assays are not diagnostic ( we are working on that.. but its a long road) and the most important diagnostic tool is how [ds18] presents clinically." Interestingly, apparently in response to my having told her that viruses seemed to be our trigger rather than strep, she also said "our research is showing that it is not only strep that will increase the titers on the assays we run.. lyme, virus, myco.. all those are also showing to have an affect on the results". Which would seem to resolve the questions on this forum about these tests from a week or two ago? Link to comment Share on other sites More sharing options...
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