CaM Kinase, ASO questions

[MSmom]

Please bear with me, as I'm full of questions today. Hopefully none of them will sound too stupid.

I am planning to have CaM Kinase testing on my daughter (and my son in the future.) Should the test be done only during a time when the ASO titre or Anti Dnase B are high? Also, should it only be done when they are having OCD symptoms? I guess I'm asking if the CaM K results are only valid when the kids are symptomatic, or is this a test that remains stable, regardless of the symptoms.

 

I'm so confused, because my 16 year old daughter is having definite PANDAS symptoms right now, but her ASO titre and I think her AntiDnase B as well are back down in the normal range. I'm guessing that, theoretically, they could have had a strep exposure so many weeks ago that their levels are already back down. Or, maybe something else triggered the PANDAS, without a strep exposure (?) Is that possible?

 

My son is having some symptoms now that APPEAR to be PANDAS symptoms, but I'm less sure his is PANDAS. His ASO is normal right now as well.

 

Thanks so much,

Pam

[Fixit]

Please bear with me, as I'm full of questions today. Hopefully none of them will sound too stupid.

I am planning to have CaM Kinase testing on my daughter (and my son in the future.) Should the test be done only during a time when the ASO titre or Anti Dnase B are high? Also, should it only be done when they are having OCD symptoms? I guess I'm asking if the CaM K results are only valid when the kids are symptomatic, or is this a test that remains stable, regardless of the symptoms.

 

I'm so confused, because my 16 year old daughter is having definite PANDAS symptoms right now, but her ASO titre and I think her AntiDnase B as well are back down in the normal range. I'm guessing that, theoretically, they could have had a strep exposure so many weeks ago that their levels are already back down. Or, maybe something else triggered the PANDAS, without a strep exposure (?) Is that possible?

 

My son is having some symptoms now that APPEAR to be PANDAS symptoms, but I'm less sure his is PANDAS. His ASO is normal right now as well.

 

Thanks so much,

Pam

 

i dont' know if this answers your quesiton....

i have not gotten a"postivie strep reading" in a couple of years....

with first camk in at 105 ds condition was not as bad as second draw 160.(though the low reading on the first to me does not mean its not pandas) ..note he was on taurine just before 1st draw...(doc k didn't care what the cam was)

so i don't know, think strep is the current problem for my boy...something else can raise the cam level

I wonder if the camk number is just a marker for any inflammation or autoimmune problem....

 

PS...weird thing is, until last onset 4/6/09 ds would completely remit with abx in 4 weeks

Edited June 7, 2010 by Fixit

[peglem]

Please bear with me, as I'm full of questions today. Hopefully none of them will sound too stupid.

I am planning to have CaM Kinase testing on my daughter (and my son in the future.) Should the test be done only during a time when the ASO titre or Anti Dnase B are high? Also, should it only be done when they are having OCD symptoms? I guess I'm asking if the CaM K results are only valid when the kids are symptomatic, or is this a test that remains stable, regardless of the symptoms.

 

I'm so confused, because my 16 year old daughter is having definite PANDAS symptoms right now, but her ASO titre and I think her AntiDnase B as well are back down in the normal range. I'm guessing that, theoretically, they could have had a strep exposure so many weeks ago that their levels are already back down. Or, maybe something else triggered the PANDAS, without a strep exposure (?) Is that possible?

 

My son is having some symptoms now that APPEAR to be PANDAS symptoms, but I'm less sure his is PANDAS. His ASO is normal right now as well.

 

Thanks so much,

Pam

CamKII seems unrelated to ASO and AntiDnase. I believe CamK levels fluctuate w/ symptom severity...those who have tested both during exacerbation and remission have found higher levels during exacerbation.

Some children never get rises in ASO and AntiDnase titers, despite multiple positive strep cultures. Really, the information gained from those titer levels is very limited...and those antibodies are not the ones that cause symptoms.

[MSmom]

Again, I'm sorry for my ignorance. Is CamKII a test for inflammatory conditions? Just wondering what it actually tests.

I'm curious, because my daughter's sed rate and other inflammation tests seem to always come out negative.

P

 

<<CamKII seems unrelated to ASO and AntiDnase. I believe CamK levels fluctuate w/ symptom severity...those who have tested both during exacerbation and remission have found higher levels during exacerbation.

Some children never get rises in ASO and AntiDnase titers, despite multiple positive strep cultures. Really, the information gained from those titer levels is very limited...and those antibodies are not the ones that cause symptoms. >>

[peglem]

Again, I'm sorry for my ignorance. Is CamKII a test for inflammatory conditions? Just wondering what it actually tests.

I'm curious, because my daughter's sed rate and other inflammation tests seem to always come out negative.

P

 

<<CamKII seems unrelated to ASO and AntiDnase. I believe CamK levels fluctuate w/ symptom severity...those who have tested both during exacerbation and remission have found higher levels during exacerbation.

Some children never get rises in ASO and AntiDnase titers, despite multiple positive strep cultures. Really, the information gained from those titer levels is very limited...and those antibodies are not the ones that cause symptoms. >>

My daughter's inflammation markers are always normal too, but she had a very high CamK activity level (242).

There's probably a good Buster explanation of the Cunningham test here somewhere, but I can't find it, so let me just try to explain as best I can.

 

CamKII is found inside nerve cells (and other cells in the body). When certain cell receptors are activated, CamKII facilitates the response inside the cell to pass the impulse on to the next nerve cell. What Cunningham found is that there are certain strep antibodies (not ASO or AntiDnase) that activate receptors on nerve cells and cause CamK to be overactive. So the cunningham test looks for those strep antibodies in the serum and measures how much CamK activity the serum produces.

 

Simply (over simply probably), The CamK test measures disregulation of dopamine.

[wornoutmom]

Peglem:

 

So these "other antibodies" - is that the tubulin, lysoglangliosides and d1,d2? Just wondering because our Cam K came back at 167 but the only thing elevated was the D2, and it was still in the normal range (negative cotnrol was 2000 - ours was 4000). Everything else was negative. And can the D1 D2 be effected by psych meds such at Risperdal ?

[peglem]

Peglem:

 

So these "other antibodies" - is that the tubulin, lysoglangliosides and d1,d2? Just wondering because our Cam K came back at 167 but the only thing elevated was the D2, and it was still in the normal range (negative cotnrol was 2000 - ours was 4000). Everything else was negative. And can the D1 D2 be effected by psych meds such at Risperdal ?

Yes, those are the antibodies. But, it isn't known yet what else may raise Camk activity. Risperdal does affect dopamine- though what effect it has on the cunningham tests, I wouldn't know.

I know that Allie still had BAD exacerbations while she was taking risperdal. She was not on risperdal when we did Cunningham tests- D2 was elevated at 16,000, the others were w/in normal range.

 

Please note, this is all my understanding only...I keep hoping somebody will come along and correct me or confirm.

[EAMom]

So there could be other "undiscovered" antibiodies that could also be raising CaM kinase ll. This might explain the kids that have high CaM but normal tubulin, lysoglangliosides and d1,d2.

[Rowens1214]

So there could be other "undiscovered" antibiodies that could also be raising CaM kinase ll. This might explain the kids that have high CaM but normal tubulin, lysoglangliosides and d1,d2.

 

 

I saw where fixit posted that her child was on taurine when they were tested? my son is taking this for his tics. should we stop this before we get the test done? Any other meds or supplements that you all are aware of that need to be stopped before taking the cunningham test. I have the kit and want to get the blood drawn this week. My son has had a bad week and last night he had a horrible rage attack. I gave him a klomopin to calm him down. Will this affect the test results. oh so many questions.!!!!!!

[tpotter]

My son is on Taurine and other supplements. He has done the Cunningham test twice...the first time before PEX last September, and the most recent about 2 months ago (he's starting to have some symptoms again.) The CaMK was slightly higher this time (136...was 123 last year), but whereas everything else was quite high last year, the only thing high this year is D2 (4000, which she noted is high.) He was on Taurine both times. So, I'm not convinced that the Taurine makes a huge difference, but I would email Dr. Cunningham and ask her. You'll get a response back, most likely the next day.