What exactly do the Cunningham numbers mean?

[FallingApart]

I know there are so many questions about the Cunningham numbers and I apologize to add one more to the mix. But what number indicates that your child has a big case of PANDAS? We did send our sample in to Cunningham even though DD was on steroids and had been for over 7 days. Our results are as follows but I don't actually know what this means:

 

DD CamK score... 139 normal age matched control 98

the score of 139 falls just below the median for the Pandas group

 

Does this mean that our blood says we don't have PANDAS?

[sf_mom]

The CaM Kinase level can be impacted by steroid use.... actually 'lower score'. PUT, your daughter is PANDAS. Our son 11 days post 5 day steroid burst CaM Kinase was 124 and he was TICing away. 98% better 5 weeks post IVIG.

[EAMom]

Falling apart...was your CaM kinase ll measured post IVIG? How many weeks post?

 

Also, what were your anti-neural anti-bodies (if you got them back)?

[FallingApart]

This is the only number I have received so far (no anti-neural anti-bodies). I just spoke with our ped and she said that it should classify as PANDAS. But I'm still confused as to what the number really means.

 

This is our only sample so far that we have sent in for testing of DD's blood. All the others that I thought we had stored from the summer had been discarded. This sample would have been 6.5 weeks past her second IVIG.

[EAMom]

Falling apart...your child falls in the pandas range.

 

It's possible (likely) that IVIG lowered your camkinase ll (6.5 weeks post). My dd's Cam kinase dropped to 119 at 7 weeks post IVIG (it was in the high pandas range just b-4 IVIG). So, I suspect your dd was also even higher b-4 IVIG.

 

I've heard (from our immunologist) that you may actually want to wait 4 mo. post IVIG to get a "real" value, since the recent IVIG might skew values (I'm assuming downward).

[FallingApart]

Thanks EA Mom. That is what I needed to know: whether she is in the PANDAS range or not. We are going for PEX on Monday. We were going regardless of the results of this number but it is nice to have something confirming our diagnosis.

 

How is your daughter holding up?