Cam Kinase question?

[trggirl]

If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

[ajcire]

My ds was not in a real exacerbation when we did it... I mean he had a minor throat clearing tic and every now and then he would have a minor meltdown that I could tell was pandas related but overall he was in a good place.... his result was still within pandas range (141). He had been on over a month of amox at the time that I had the blood drawn.

 

 

 

If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

[dut]

Our dd wasn't in an exacerbation and was symptom free at the time of the draw but she came back at high mid PANDAS range at 165%. I think it depends on the child though. Dr Cunnningham's office originally advised us to wait until she had an exacerbation but as we felt we could afford to do 2 draws and wanted to see what her baseline number s looked like, we chose to do one out of an exacerbation.

[fuelforall]

No. My son wasn't good but he wasn't bad. The number sort of reflected it, modest Pandas. IF he had had it at his worst, I can only imagine.

[sf_mom]

One thing that might impact CaM results is steroid use. I understand this is a common theme in the results 'lower score in conjunction with steroid use'. Our son was 11 days post 5 day steroid burst and his score was 124. His blood draw was approximately 8 weeks post sudden-set. Our other son who hasn't used any steroids yet was 148.

 

IVIG would also impact results and we are waiting at least six months to a year post any treatment to re-test.

 

-Wendy

[EAMom]

If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

It probably depends on the child.

 

The first time we drew dd wasn't in an exacerbation, and she tested in the high PANDAS range (had been on abs for 1 year). The next time we tested she was in an exacerbation and she was in the high SC range (still on abs).

 

SFmom is correct that steroids/IVIG will affect results, so definitely get a draw before you do either of those.

[trggirl]

So if steroid burst would affect the scores, would Ibuprofen?

[sf_mom]

I doubt Ibuprofen would have the same impact as steroids but the variables are unknown to date and further testing would need to be preformed.

 

What is most important to someone like Dr. K is clinical picture but he is an experienced PANDAS Dr. I have found the CaM Kinase helpful when convincing OTHER Dr.s that are not that familiar with PANDAS and there are no raised ASO or Anti-DNase-B Titers. It is also a good reference point for many parents. I know if in a year from now my son's CaM Kinase is within normal range I will feel a little more confident in his recovery.

 

Hopefully, that helps....

 

-Wendy

[trggirl]

It helps tremendously!!! I want to make sure I know what I am talking about as we go forth!! Thank you to all the replies!!

[kcdc3]

If you get the Cam Kinase test when you are not going through an exacerbation, will you get negative results?

 

Our dd was tested out of exacerbation and we came back at mid-high at 163. She had been on 30 days of antibiotics a few months prior, but was not on anything at the time of the blood draw. She went into an exacerbation about 3 days after the draw.

[EAMom]

So if steroid burst would affect the scores, would Ibuprofen?

 

I don't think so. We were on 200mg Ibuprofen daily (long term dose) when dd (54 pounds) had the CaM kinase ll of 253, which is the highest CaM Dr. Cunningham has ever seen.