I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-published a number of journal articles with Dr. Swedo and others in relation to her blood assays and their dramatic correlation with both Sydenham's Chorea and PANDAS patients. Basically, they show elevated anti-neuronal antibody titers that are much more reliable indicators than the standard "ASO and Anti-DNase B" titer tests, in particular CaM kinase II levels (enzyme critical to neurotransmitter function in the brain). These titers show much higher levels for PANDAS kids vs. classic OCD, tics / Tourettes, ADHD, or healthy controls. (See http://www.jni-journal.com/article/S0165-5...0241-4/abstract ).
Well, we enrolled in the study, too. Our son's results were consistent with his PANDAS diagnosis: elevated anti-lysoganglioside, anti-tubulin, and signaling antibody levels. His CaM kinase II was at 187% of control, which puts him at the upper end of Dr. Cunningham's published PANDAS patient data.
You'd think this would be pretty definitive... but we STILL can't get a local doc to go along with the PANDAS diagnosis (although one is "considering the evidence").
Anyway, wanted to share this and see what other study participants are experiencing with their children's blood test results? Seems like this is a "smoking gun" that should convince (most) doubters, so if you're getting push-back from your local docs, might be worth volunteering for this study. More info about Dr. Cunningham can be found here: http://www.ouhsc.edu/mi/faculty/cunningham.html .
