Negative CaM kinase II test anyone?

[Phasmid]

I am going berzerk waiting for my son's CaM test. I am wondering if any of you have a diagnosis of PANDAS, yet the CaM came back under the PANDAS range???

[norcalmom]

I'm waiting for ds's too. We took it when he was at his best, as oppossed to exacerbation. I even had a dream last night that it came back at 109.

 

Whatever it is, knowing is better than not knowing. If it is clearly in normal range, we may pursue other avenues - maybe try some SSRI's and traditional therapies (which we have never done). If it is high, we may do IVIG or PEX. IF its is low pandas, I will do a couple steroid bursts, taurine, maybe some NAC and anything else I can do to lower it further and then take it again in 6 months.

[kimballot]

I feel for you. The waiting is the hardest part.

 

I knew the day mine was coming and we were driving back from Dr. Bs in Connecticut. We stopped at every res area and restaurant with internet along the way to check for the email! Ours was in the PANDAS range, but not everyone's is.

 

Remember that even if the Cam Kinase score is low it is just one piece of the puzzle. Also, you will get the Cam Kinase score first, but you probably will not get the anti neuronal antibody numbers for a few more weeks. The meaning behind the anti neuronal antibodies is less clear, but even if the Cam Kinase is within normal limits, you may see atypical reaction sin the anti neuronal antibody numbers.

[Suzan]

I am going berzerk waiting for my son's CaM test. I am wondering if any of you have a diagnosis of PANDAS, yet the CaM came back under the PANDAS range???

 

Even after getting the results back, I didn't know how to read them and I read them as "not in range" when actually they were. I was so stressed. My younger dd's results were 118, just barely in range. At the time of the test, she was acting like a baby at age 7 and restricting most food. She has improved so much on abx. I can imagine some docs may have thought her test could be questionable. But it is obvious that she has pandas and is much helped so far by what we are trying.

 

Hang in there. The waiting is so hard!

 

Susan

[P_Mom]

My older, clearly PANDAS son has a Cam Kinase score of 112...... he was called low positive in an e-mail from Kathy Alvarez, but, when the hard copy came in the mail, he was marked negative for PANDAS range Cam Kinase.

 

He is a mild case caught early...... makes sense he would be in the low range. If you look at the graph, he overlaps with normal and PANDAS...just on the borderline.