Cam kinase II of 178 high enough?

[tu4four]

We saw our llmd today, and we were discussing my daughter and whether it would be beneficial to pursue ivig. (We also discussed mold, etc.). He was leaning toward no or not yet....so my question is....is it enough to have a cam kinase II level of 178, and does that ever lower on its own? My daughter's test was almost 3 years ago. That score (along with normal strep titers) did not make our immunologist talk about ivig or the like--even when I mentioned it. This was in feb.

 

We are seeing a new immunologist Wednesday who deals with pandas....

 

So my question is...should I emphasize that test more when we see him? I don't really want to so that test again...we've for so many irons in the fire that I feel like the money would best be spent elsewhere, but.....

 

Honestly, I think she's got a huge mix of things including pandas, lyme, Bart, etc....and we are looking at the mold issue.

 

Any advice appreciated.

[LNN]

CamK does go up and down - it's a signaling mechanism and fluctuates. You might want to PM EAMom - she tested her DD over multiple periods of illness and health.

 

The test, even after 3 yrs, is still significant b/c it shows an autoimmune/inflammation response. But I wouldn't think you need to do it again to "prove" Pandas.

 

Is high CamK enough to warrant IVIG? Depends on whose protocol you follow. The researchers have only used IVIG to end a flare. So if you're not in a flare, IVIG wouldn't be warranted, regardless of whether you have Pandas as an underlying condition. Other docs believe you should do IVIG every 8 weeks regardless of if you're in a flare, in order to build up the immune system and water down the levels of renegade auto-antibodies. But under this protocol, I don't think your current CamK level would matter.

[nicklemama]

At this weekends conference in Providence, nothing was mentioned about using the Cunningham test to determine a need for IVIG. In fact, the criteria promoted for receiving IVIG was to reserve it for those children who were severe. It was also the opinion of most of the experts that IVIG should not be used frequently and that if you are not getting a response, to discontinue using IVIG. The rationale is that it is not without risk. There should be a risk benefit ratio discussion. Don't shoot the messenger. Thank you.

[tu4four]

My daughter is not aving a "flare" in the classic pandas sense.....but she has PANDAS and is so out of control that we have to do something....This is the reason we have been looking for ivig....we did 't even look at it as an option for a long time. But now, 8 years after all of this started, I have to consider everything as a possibility.

 

Her thyroid tests were fine...except for tpo, which could be an indicator of (but is by no means a diagnostic tool in and of itself) an encephilitis....we have an MRI and a lumbar puncture scheduled for that. But our neuro is not a pandas doc and would most certainly go toward long-term, high dose steroids (which would not be good considering she has lyme).

 

So while we are still investigating other options, I feel like I need to try to get things lined up for a possible ivig. What would you do?

[nicklemama]

If she is out of control and difficult to live with and its affecting quality of life, my opinion is that is when you would want to seek IVIG. I believe it was Dr Latimer who said you get diminishing returns on repeat IVIG and my experience is just that.