justinekno Posted May 7, 2010 Author Report Share Posted May 7, 2010 (edited) Our take on this test is that it is a piece of the puzzle and not the "diagnosis". We are using this information along with other tests (strep related and others) to determine the best medical care for our son. For us, it was confirmation that we are going down the right road - no more, no less. what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd..... I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet. I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet. Edited May 7, 2010 by justinekno Link to comment Share on other sites More sharing options...
wornoutmom Posted May 7, 2010 Report Share Posted May 7, 2010 For me, that distinction between infectious and non-infectious is enough. Go back to Swedo's original paper and it clearly says that once the immune dysfunction is set in place from strep, symptoms can be triggered by things OTHER than strep - other viruses and bacteria. So if this is triggered by strep initially setting up the immune system response dysfunction, all that "other stuff" that triggers symptoms subsequently (various virus and bacterias) is still "PANDAS". So strep was our initial "culprit" but 7-8 years after the fact, strep no longer seems to be our "trigger". I'd like to hear from other parents of older kids who've had this for a while, but I'm thinking this is what PANDAS looks like years down the road. PANDAS is the best name to describe this, but its what we've got. Link to comment Share on other sites More sharing options...
JAG10 Posted May 7, 2010 Report Share Posted May 7, 2010 WOM- I think you are right. I think what Faith is saying is that if u cannot track that pattern of positive strep swab- behaviors skyrocket for weeks to months- then begin to improve~several times; to go along with your Cunningham test and whatever other evidence you have, at this time the high CamK score does not bypass all or any of that other criteria and make the child PANDAS. Swedo made the criteria for PANDAS, so until she changes/expands/amends it, that's what it is. And it's narrow if your child did not get typical strep throat symptoms or also got ear infections so why bother swabbing or got strep some place other than their throat or started when they were really little. Doesn't mean a pandas doc with lots of experience can't determine that your child likely fits the profile of a pandas child based on the evidence you have or that their symptoms won't remitt with the treatments identified for PANDAS. Link to comment Share on other sites More sharing options...
Mary M Posted May 7, 2010 Report Share Posted May 7, 2010 (edited) We should be receiving our kit via fedex in the next day or two. Keep posting so that when our results come in I will have already learned how to understand it from all of you! Thanks in advance for helping to keep me educated and informed. Edited May 7, 2010 by Mary M Link to comment Share on other sites More sharing options...
Kay Posted June 2, 2010 Report Share Posted June 2, 2010 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? Link to comment Share on other sites More sharing options...
tpotter Posted June 2, 2010 Report Share Posted June 2, 2010 The numbers explanation are found in her article about Molecular Mimicry. Do you need me to send that to you? If so, send me a pm with your email, and I'll forward that information on to you. 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? Link to comment Share on other sites More sharing options...
peglem Posted June 2, 2010 Report Share Posted June 2, 2010 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? About a week after the email, I received a hard copy in the mail w/ personal comments from Dr. Cunningham...was a very nice thing to show the doctor. Link to comment Share on other sites More sharing options...
Kay Posted June 2, 2010 Report Share Posted June 2, 2010 Great I guess that was what I was waiting for. Thanks, maybe with being at the autism one conf. she is a bit behind, I will be wait then. thanks! 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? About a week after the email, I received a hard copy in the mail w/ personal comments from Dr. Cunningham...was a very nice thing to show the doctor. Link to comment Share on other sites More sharing options...
justinekno Posted June 2, 2010 Author Report Share Posted June 2, 2010 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? Link to comment Share on other sites More sharing options...
Kay Posted June 2, 2010 Report Share Posted June 2, 2010 thank you 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? Link to comment Share on other sites More sharing options...
bgbarnes Posted June 3, 2010 Report Share Posted June 3, 2010 I have not gotten my mailed report either. Brandy Link to comment Share on other sites More sharing options...
deby Posted June 3, 2010 Report Share Posted June 3, 2010 I'm new at this, so I am not sure if I should do this test. My son's ASO levels were high and the DNase levels were extremely high >1360. Should I do this test? how much it costs? how long it takes? is it ok to do it while he is with augmentin? Can this test gives more information than testing for titers? Thank you! Link to comment Share on other sites More sharing options...
Kay Posted June 4, 2010 Report Share Posted June 4, 2010 It is just another bit of information to have. One doctor said it wouldn't hurt to do it and the other one said yes to do it. My daughter did not have high levels on aso or dnase, so the Cunningham test ended up being helpful to us, although it is not a dx it does at least give you information that something is going on and that is reasurring. It cost 400.00 the kit is sent to you with a fedex label for an overnight shipment to send it back. It took about two weeks for us to get the first information via email, still awaiting final write up from Dr. Cunningham. You can do it while on antibiotics but not the steroids. I see on here some people have had issues with labs drawing the blood since it is not being run at their labs, but also see that some labs have been very helpful you would want to check with the lab you use. I had my naturopath draw the blood and spin it (directions and all tubes included in the kit) and then I sent it via fedex to Dr. Cunningham. You can't send it on a Friday because it is an overnight shipment and no one is there to recieve it on the weekend, so be sure to do it early in the week. I'm new at this, so I am not sure if I should do this test. My son's ASO levels were high and the DNase levels were extremely high >1360. Should I do this test? how much it costs? how long it takes? is it ok to do it while he is with augmentin? Can this test gives more information than testing for titers? Thank you! Link to comment Share on other sites More sharing options...
deby Posted June 4, 2010 Report Share Posted June 4, 2010 It is just another bit of information to have. One doctor said it wouldn't hurt to do it and the other one said yes to do it. My daughter did not have high levels on aso or dnase, so the Cunningham test ended up being helpful to us, although it is not a dx it does at least give you information that something is going on and that is reasurring. It cost 400.00 the kit is sent to you with a fedex label for an overnight shipment to send it back. It took about two weeks for us to get the first information via email, still awaiting final write up from Dr. Cunningham. You can do it while on antibiotics but not the steroids. I see on here some people have had issues with labs drawing the blood since it is not being run at their labs, but also see that some labs have been very helpful you would want to check with the lab you use. I had my naturopath draw the blood and spin it (directions and all tubes included in the kit) and then I sent it via fedex to Dr. Cunningham. You can't send it on a Friday because it is an overnight shipment and no one is there to recieve it on the weekend, so be sure to do it early in the week. I'm new at this, so I am not sure if I should do this test. My son's ASO levels were high and the DNase levels were extremely high >1360. Should I do this test? how much it costs? how long it takes? is it ok to do it while he is with augmentin? Can this test gives more information than testing for titers? Thank you! Thank you! Link to comment Share on other sites More sharing options...
tapiash Posted June 4, 2010 Report Share Posted June 4, 2010 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? Dr. Cunningham told me it could take a couple months. Link to comment Share on other sites More sharing options...
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