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Michel12

Question about cunningham panel

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Just wanted to clarify something about cunningham panel. I had really high titers with Pandas very likely so that means I have PAndas and not PAns correct? The antibodies are abnormal to strep only right? My strep has always been negative but I responded great to antibiotcs and I have had so many infectious disease tests and they have always been negative. My ped says I might have an unrecognized infection but all the other tests besides lyme usually are very solid for diagnosing right? I only hear about the lyme test having alot of false negatives. IT would really suck if all the others had the same risk. Its so hard to tell if I have an infection because I feel bad most of the time and my symptoms are so vague that it baffles the doctors. Thats why I rely on these tests but if they are coming back false negative then im getting short changed.

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I also have a couple of questions. We have been awaiting results DD doctor just told me she has B1, LYSO, AND CAM results are out of range. I have no idea what that means. Can someone chime in? The lab never sent us a login to get the results on line. I think this is because the procedure for payment was differ than what most have gone through on the forum. The hospital lab did the processing for us and made the payment.

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I am no expert on this panel, but I will comment that I believe my daughters results were also abnormally high dopamine 1 , lysoganglioside and CaMK was moderately high. She has done extraordinarily well with immunosuppressive treatments and IVIG.

also, in response to the first poster, I think you were asking if this test shows positive only if you have a strep infection, correct? No, this test shows anti neuronal antibodies not strep specifically..

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I am no expert on this panel, but I will comment that I believe my daughters results were also abnormally high dopamine 1 , lysoganglioside and CaMK was moderately high. She has done extraordinarily well with immunosuppressive treatments and IVIG.

also, in response to the first poster, I think you were asking if this test shows positive only if you have a strep infection, correct? No, this test shows anti neuronal antibodies not strep specifically..

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The test is not specific to strep or PANDAS. Our children had elevated Cam Kinase II indicative of PANDAS but ultimately had PANS due to chronic Lyme et al diagnoses.

Edited by sf_mom

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Only thing I've ever been sure of is Dd's sudden onset of symptoms and rage were caused by something and the culprit has been her autoimmune system. Dd has had probable diagnosis but they have all turned out to be the result of her immune system causing the problem. The c panel test was requested by the doctor to help point us in a direction that could confirm pursing treatment for pans/pandas.

 

@powpow, what are immunosuppressive treatments? Dd has had two steroid treatments, and during the dosage her verbal tics increased. But then went away after the dosage was completed. When ever she flares with illness we give her ibuprofen with a stimulate which seems to work best and sometimes benadryl for night sleeping.

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4nikki~ my daughter has been on cellcept and monthly ivig, iv soludmedrol since 8/2013. she received rituximab in april 2014 & dec 2014. I am not sure which of that cocktailhas worked- probably all of it !- but she has gotten to places we never dreamed. She still flares, but they are much shorter and less severe than before.

She takes advil for pain (usually just headaches here and there) and I cannot tell if it helps at all, because generally, her symptoms are so mild now that any benefit of advil would not really be noticeable anyway. when she was very sick, i do think it may have helped a little, but hard to day.

My daughter (a different one) has remission from her verbal and motor tics after the month of steroids end- this has happened a few times and the tics have stayed away for months after.

I am going to send you a PM

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This is from moleculera's website, there's a lot of info there.

PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel™ tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment.

 

My understanding is several of the markers tested in the cunningham, are inflammatory markers, that show inflammation: support the Autoimmune encephalitis theory, so many results are normal on other tests for PANDAS? PANS kids, but the cunningham is very targeted but complicated and needs interpretation from a qualified dr.

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Do clinical observations - severity of PANDAS symptoms - have any relationship to outcome of Cunningham panel? If one were to administer the test in a flare vs in remission would the results vary?

 

Does treatment with antibiotics or steroids effect outcome of the Cunningham panel?

Edited by dasu

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yes some have tracked their own children and seen a correlation based on flares. I think buster may have done that.

steroids do affect it. I think they need to be off for a two months. I asked that question specifically of dr Cunningham a few years ago. I think that was her answer!

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My son was high for CamKII, tubulin and D1. He has lyme triggered PANS. No strep.

Just got dd cunningham result. High for D2, Lyso and CAM. No flare no tics at time of blood draw for at least 3 months and post steriod taper 3 months.

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Some questions for the group. Can someone explain how a child goes from High CamKII to PANS? DS has Lyme - diagnosed in 2013 - sudden onset of tics in 2012. Cunningham panel came back with CamKII of 147 - very high. So here is my stab at what happened

Lyme triggered an immune response which went haywire - causing autoimmunity and high levels of antibodies against Basal ganglia which is showing up as high CamKII numbers. Is this theory correct? Am I missing something? Trying to build a mental model of what is going on...and what treatments help bring down the CamKII numbers....

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