question about cunnington Test

[trggirl]

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.

 

 

I know that we had an extremely high Camk level and I would not consider us an extreme PANDAS case. Not in tics or OCD. I do think her ADHD is extreme though.

[dcmom]

norcal mom- to answer your question about treating with normal cam kinase- yes.

 

I have two daughters. Youngest one, classic overnight onset pandas with strep a year ago, March 09. Sister also had strep at the time, with (we weren't sure at time) mild onset of pandas.

 

Summer 09 had both kids CamKinase tested. Young one (classic onset) was around 160, treated aggressively. Older one (mild onset) was 106, bit with high anti neurals. This threw us off course, for a month or two. She then, unfortunately, had a more classic crippling onset after H1N1 and a cold. Never did the Cam K again, but ended up with antibiotics, steroids, and plasma pheresis. The proof is in the pudding, the treatment worked.

 

So- I think the Cunningham test is great- BUT I definately believe it should only be one piece to the puzzle in a clinical diagnosis. I also think the anti neurals should probably be given as much weight as the cam kinase.

 

Both girls are stable and (hopefully) healing, now.

[Phasmid]

Anybody have any information regarding how the cam kinase test works if it is NOT a strep infection triggered disorder? I mean, are the results the same (elevated enzymes) in PITAND? Is Cunningham only processing samples from known Strep/PANDAS kids?

 

We don't know if my son is a Strep case or not (he did have a bad strep infection back when all this started in 2003, but haven't detected Strep since) as his last episode didn't involve a positive Strep test. Just wondering if we should fork out the $400 that we don't have in order to have baseline data prior to going to Dr. K in June.

[Buster]

Dr. Cunningham is partitioning samples based on known strep precursor. However, many people have submitted samples without direct correlation with positive throat culture, elevated ASO or elevated Anti-DNAseB. I think she's pulling in the samples for the statistical sampling. I think if they get the NIMH grant then they'll be more exacting on separating on precondition.

 

Buster

 

 

Anybody have any information regarding how the cam kinase test works if it is NOT a strep infection triggered disorder? I mean, are the results the same (elevated enzymes) in PITAND? Is Cunningham only processing samples from known Strep/PANDAS kids?

 

We don't know if my son is a Strep case or not (he did have a bad strep infection back when all this started in 2003, but haven't detected Strep since) as his last episode didn't involve a positive Strep test. Just wondering if we should fork out the $400 that we don't have in order to have baseline data prior to going to Dr. K in June.

[Phasmid]

Thanks. Your post convinced me to go ahead with the test.

 

Mary