powerofprayer Posted February 16, 2013 Report Share Posted February 16, 2013 We had the Cunningham Cam Kinase test done about 3 1/2 years ago when it was still in the research phases. Back then my dd (then 6) had elevated cam kinase at 175. The results said that "she MAY have antibodies signaling in the brain". My question is, Now that this test is available commercially are those results more definitive? Do they mean something more significant now? Are people who suspect PANDAS still getting this test to confirm/rule out the dx? Sorry I'm probably not making much sense. My dd (now 10) only real symptom is tics since age 4. She did have strep throat at age 7, was given pen VK for 10 days I believe. Never noticed any decrease in tics. I'm only re-pursuing this now because after many years of tics being hardly noticeable to anyone but us, they have increased and now there is a vocal involved. Her current pediatrician is willing to DISCUSS the possibility of this being something other than genetic TS. So I was wanting to bring her the info of that elevated Cam Kinase but I need a way to explain to her what it means. Can anyone help? Link to comment Share on other sites More sharing options...
beeskneesmommy Posted February 16, 2013 Report Share Posted February 16, 2013 Since she has had a recent increase in tics, how about starting with Strep/Myco titres? This may be something that her ped. understands a little easier? Link to comment Share on other sites More sharing options...
thenmama Posted February 16, 2013 Report Share Posted February 16, 2013 And try this article on Cunningham's work. Good luck! Link to comment Share on other sites More sharing options...
powerofprayer Posted February 17, 2013 Author Report Share Posted February 17, 2013 She did say she wanted to do some testing before just prescribing abx as a trial. I assumed she meant strep Titers. But from What ive learned here those dont even have to be elevated to indicate strep do they? I've read alot about myco here but I'm not real sure what that even is. Is it a type of pneumonia? Is it pretty common? I'll definitely ask her about that too. I thought if I could explain the cam Kinase to her she would be more willing to investigate this further. Not just say tic disorder and want to give the typical drugs. Link to comment Share on other sites More sharing options...
powerofprayer Posted February 17, 2013 Author Report Share Posted February 17, 2013 And try this article on Cunningham's work. Good luck! That is the article Dr Cunningham gave me back when we sent In our samples. But because that was just in the research phase then, and now it is a commercially available test, I was wondering if any of the info changed. Had any of their hypotheses been proven? Disproven? Does an elevated cam Kinase now mean definite PANDAS/PANS?. That's really what I'm hoping someone can shed some light on. Link to comment Share on other sites More sharing options...
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