Cunningham results

[pamsboy]

Question: my son had Cam Kinase II results of 183 which is very high. His anti-neuronal antibodies were normal except for mildly high Anti-dopamine 1 of 2000. Anyone know the significance of this, and why the cam would be high without others high? His ASO is sometimes mildly high, and he also just tested positive for Lyme PCR recently. We've done IVIG x 5 but mid dose.

[norcalmom]

I dunno about the anti-neuronals. Even the high end of the normal range is kinda abnormal for these, from what I have read. If you aren't close to the negative control, you may be very many times the "normal" they haven't really established what normal range is.

 

Was he in exacerbation when you did the test, and how long did you wait post ivig?

[KaraM]

Sound very similar to my dd. She was 189 and just one of the anti-neuronal (can't remember which one) was slightly above normal. I never quite understood what the significance of the anti-neuronal tests were - above my head...the Cam Kinase seemed to me to be the biggest marker.

[pamsboy]

He was not in exacerbation during this draw, and it was one month post IVIG. Thanks!

[norcalmom]

it seems odd that his cam K would still be so high 4 weeks after ivig, but might explain why his anti-neuronals are in the normal range. Did you do have one prior to ivig to compare to?

 

 

Did you email cunningham that you have done several ivigs prior to the draw and the Cam K is still very high? I'd be very interested in if she has comments about that.

 

How is your child doing on the lower does(?), more frequent, ivig, schedule symptom-wise?

[amyjoy]

Hi There

 

This may be a bit simplistic in my understanding, but i believe that the activity of the antibodies (the binding of the antibodies to the ganglia cells) is the direct cause of the cam Kinase elevation, or activation. So the antibodies could have been and probably were elevated in the past if the cam kinase is high, and may be again in the future.

[pamsboy]

We are probably going to switch to high dose IVIG as the lower dose causes the Pandas to worsen right afterward.

[norcalmom]

does he have a positive lyme diagnosis? I know you mentioned he tested positive on one test.

[EAMom]

What dose was your mid-dose?

 

What dose are you doing to use as high dose (1.5gm/kg or 2.0gm/kg...or something else?).

 

norcalmom...I agree that 189 seems very high for 4 weeks post IVIG....maybe that is the difference between low/mid-dose and high dose IVIG? Maybe low/mid-dose doesn't knock the CaM kinase down?

Edited October 7, 2010 by EAMom

[norcalmom]

If you look at cunninghams Cam K II study, 5 of the 16 pandas kids had less than a significant drop in cam K II in "convalescent" measurement. This is in chart on page 3. I have sent her an email asking what is "convalescence"...were all/some of these kids treated with ivig? And when was the blood drawn post ivig? I cannot find in the study if the kids had ANY treatment, I would think that would be mentioned in there somewhere.

Her study just says "sera obtained in the absence of symptoms". I've been assuming these kids had ivig. Was that anyone else's assumption? where'd I get that? Part of the study shows results from igg depleted serum,but that's just removing the igg from the blood sample.

 

So perhaps for some kids the removal of the antineuronal antibodies ( IF kids in the study had ivig) made symptoms go away, but Cam K remained high for some reason (and maybe for those there is some common factor...like those are the ones that had PITAND, or those are going to relapse when they get a cold, or those are the ones with a lyme infection as well)

 

Does anyone know about the "convalescent" sera in her CamK II study? I think for a while she was taking sera measurements for her study post ivig? I know a few people on the board did post ivig measurements - was that at her prompting as part of the study ?

[pamsboy]

We saw Dr Jones this past week, and he seems to think he has it, but we are waiting for the western blot results. Our dose was 800mg/kg last couple of times, and 700mg/kg before that. Dr C seems to think his anti-dopamine 1 is signaling although still very high normal.

[EAMom]

If you look at cunninghams Cam K II study, 5 of the 16 pandas kids had less than a significant drop in cam K II in "convalescent" measurement. This is in chart on page 3. I have sent her an email asking what is "convalescence"...were all/some of these kids treated with ivig? And when was the blood drawn post ivig? I cannot find in the study if the kids had ANY treatment, I would think that would be mentioned in there somewhere.

Her study just says "sera obtained in the absence of symptoms". I've been assuming these kids had ivig. Was that anyone else's assumption? where'd I get that? Part of the study shows results from igg depleted serum,but that's just removing the igg from the blood sample.

 

So perhaps for some kids the removal of the antineuronal antibodies ( IF kids in the study had ivig) made symptoms go away, but Cam K remained high for some reason (and maybe for those there is some common factor...like those are the ones that had PITAND, or those are going to relapse when they get a cold, or those are the ones with a lyme infection as well)

 

Does anyone know about the "convalescent" sera in her CamK II study? I think for a while she was taking sera measurements for her study post ivig? I know a few people on the board did post ivig measurements - was that at her prompting as part of the study ?

 

Dh says that all of the "convalescent" measurements were post plasmapheresis.