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question about cunnington Test


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I am going back and forth on my decision to get the cunningham test for my boys. In previous posts i have talked about him and that after a phone consult with Dr. K it was recomminded to proceed with IVIG and not to bother with the cunningham test. I just read a post on Dr. T.'s web site and not sure if i interrupted it right but does this test help to figure out if you child has true PANDAS or its TS, OCD.

 

I would like to proceed with IVIG but my son is not a clear cut case of PANDAS or TS for that matter. He defiently has OCD AND TICS but i just dont know. Also is the CamKII the same thing as the cunnington test. Sorry for the ignorance about these. I am new to all this and just trying to figure out what to do next.

 

My youngest son has started doing things that i am pretty sure are tics. throat cleaning. snapping his fingers and spitting. I am just a wreck with 2 kids going through this. MY dr put my youngest on Keflect 1000 2 x daily last friday and he seems to be getting worse. Is this normal?

 

Sorry for so many questions. My mind is racing with questions and worries.

Edited by Rowens1214
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rowens - we did not do the cunningham test. i would love to have those numbers and to support the research but for us, it's a hit to our budget.

 

the factor i used was 'what am i going to do with the results'. at the time and now, it wouldn't change how we are treating him. we may need it in the future if we change course. one of our drs told me early on that early in her career, she ran lots of tests and it was great to have all the info. however, now she only runs things that will determine how she treats.

 

that being said, recently we went to a new dr on the referral of a current dr. he diagnosed my son with lyme and toxoplama gondii infection which we are now treating for. how would we have ever known otherwise?

 

it is certainly a conundrum to know what to test for and when to stop.

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Cunningham's test (CaM kinase ll) is pretty good at separating PANDAS vs. non-pandas tics/tourettes.

 

For us it was also really nice to to have some labwork that firmly confirmed our diagnosis, esp. since we have always had low strep titers. It also was the piece of "evidence" that swayed out local (university hospital) immunologist to order IVIG for us (you know, some hospitals are into "evidence based medicine"). Without it, we probably would have ended up traveling to Chicago (from CA) to have IVIG with Dr. K. So, in that sense, I suspect doing the test may have saved us money in the long run. Insurance covered our local IVIG, and we didn't have to deal with travel, as much time off work, hotels, airfare, etc.

 

The $400 fee is also tax deductable...if that helps at all.

Edited by EAMom
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I have the test, and am waiting for an exacerbation. I've been told the kids test lower if not in exacerbation. We havn't really had a bad exacerbation since our diagnosis.We've had a few blips - a few days of increased sysmtoms where it looks like another exacerbation, then back to base line. I debate daily if "baseline" is good enough and if I am harming him by not getting the IVIG. I'm thinking of using the Camkinase test while he is at baseline. If he tests in pandas range at baseline, that will help me with that decision. I agree with only using the test if the results will help you either diagnose or change the course of treatment. Worst case for us, I spend $400 and test low, don't get IVIG. At least I might have some peace of mind over the decision not to do IVIG.

 

I wonder if anyone has had negative cunningham's test, and done IVIG anyway based upon clinical diagnosis?

 

(yes - CamKinase and cunningham's test are same...cunningham runs a number of test on the blood you send her but the most importantt for pandas is the CamKinase II). You might consider getting the kit now, and having it ready for the next exacerbation.

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We debated that too, and ended up testing during baseline (not in an exacerbation) the first time... it turned out our "baseline" was in the high PANDAS range.

 

 

Thanks so much for all the replys. Your answers were all a huge help. I too wonder If anyone has come back low and proceeded with IVIG and had good results. Thanks everyone

 

Robin

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We debated that too, and ended up testing during baseline (not in an exacerbation) the first time... it turned out our "baseline" was in the high PANDAS range.

 

 

Thanks so much for all the replys. Your answers were all a huge help. I too wonder If anyone has come back low and proceeded with IVIG and had good results. Thanks everyone

 

Robin

 

 

Question,,???

 

 

After IVIG the tests wouldnt be correct,right?/Due to the antibodies?

 

Melanie

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According to the study information we got from Cunningham (which you can also read on pandasnetwork.com in Busters reseach studies section) after IVIG treatment the the CamKinase II goes back to normal levels. I don't think they are running the tests after IVIG anymore - unless you buy it because you are curious, or IVIG doesn't work for you.

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Thanks for letting me know that EAMom!

I actually made up my mind last Friday. We are going in on Monday to get the "baseline" CamKinase test. I'm glad to hear that you did this too and got the findings you did (not glad about the findings...well must have been sort of good - having a test result that means something and a course of action) .How bad were your daughters symptoms at baseline? For us baseline means minor tic/compulsion (glancing at sun) up to 30 times a day, and can't STAND to hear me - this is realted to only me and somewhat to my husband - chew or swallow ( he sees me swallow siliva - becuase he is watching me for it - and will rage at me and be unable to "get it out of his head" for several minutes). And irritability. We don't think this is too bad. He is generally happy, in school, functional.

 

When in exacerbations, tics become multiple violent tics, bed wetting, insomina, night mares, obsessions with death (or other things) extreme irritability and sensitivity to sound, and he almost can't bear to be int he room with me because he might see me swallow.

 

I wonder if there is any correlation between the types of behaviors at baseline and the levels of CamKinase II. By that I mean, one kid's throat clearing tic is another kid's anorexia? They could have the same CamKinaseII results? Wish the researchers could share more info with us. I cannot wait for that 8 year study that ends in August. I hope they don't take long to publish findings once the study is completed.

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According to the study information we got from Cunningham (which you can also read on pandasnetwork.com in Busters reseach studies section) after IVIG treatment the the CamKinase II goes back to normal levels. I don't think they are running the tests after IVIG anymore - unless you buy it because you are curious, or IVIG doesn't work for you.

 

 

How long does it go down for after the IVIG?

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Fo us:

 

In Oct 2009 (2mo. post IVIG) our dd was down to 119...it never got to zero/normal that we know of (100-normal).

 

It might be that 2 mo. is too soon to really check to get a good reading. Before IVIG our dd tested in the high PANDAS range (160's) to the highest Dr. C. had ever seen--254 (after strep exposure and then H1N1 2 mo. later...I'm not actually sure which one raised it, but I think it was the H1N1). Even at 254 she was pretty functional (although very "difficult", anti-social, lots of anxiety, irritable)...I suspect she was helped greatly by all of the anti-inflammatory stuff she was already on (advil, azith, prozac).

 

Yes..I'd be curious to know what her CaM kinase ll was in Spring 08 (age 7) when all #$%^&* broke loose (hospitalized for anorexia nervosa, also had bi-polar beh, severe OCD, suicidal statements, ODD, depression, hallucinations...) and she was NOT functional. But, at that point, she wasn't on Azith, Advil, etc.

 

We tested most recently mid March 2010 (7mo. post IVIG)...after return of some PANDAS symptoms after a 1 day fever in early Feb. She was in the 130's. Our current symptoms (which I'd consider a "mild" exacerbation currently...they were worse in before we did 5 days of pred/increase in antibiotics) include a mild vocal tic, some anxiety, less social at school (reads alone during recess, doesn't play with the other kids), "measurement rituals" during eating, food concerns, some concerns/restriction food. Before we did this most recent round of pred (5 days) and antibiotic increase she also had lots of irritibility and some margin drift (which she had all during 3rd grade and finally resolved after our first IVIG).

Edited by EAMom
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I wonder if there is any correlation between the types of behaviors at baseline and the levels of CamKinase II. By that I mean, one kid's throat clearing tic is another kid's anorexia? They could have the same CamKinaseII results? Wish the researchers could share more info with us. I cannot wait for that 8 year study that ends in August. I hope they don't take long to publish findings once the study is completed.

 

I thought I read/heard somewhere that the kids with tics tend to have higher CaM kinase ll levels. I also heard that the kids with anorexia are more likely to need a repeat IVIG so I would suspect that those kids also have higher CaM kinase ll levels.

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According to the study information we got from Cunningham (which you can also read on pandasnetwork.com in Busters reseach studies section) after IVIG treatment the the CamKinase II goes back to normal levels. I don't think they are running the tests after IVIG anymore - unless you buy it because you are curious, or IVIG doesn't work for you.

 

We decided to go ahead and obtain CamK tests for my son, because after a year of monthly IVIG, he was only somewhat better. So, even knowing he was just a week past IVIG, was on Zith and had received IV steroids, days prior....we went ahead and had them drawn, he was 148, still in PANDAS range. This also made us begin testing for other co-infections, found out he tests positive for Lyme.

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