IVIG and CamKinase II

[trggirl]

Does anyone know if it is generally accepted that CamK II decreases after doing IVIG? How about if the CamK is elevated without the four tested antineuronal antibodies being elevated? I have held off doing IVIG because I just don't understand how it works in the body of PANDAS kids and at this point I feel like it is a 50/50 chance of helping. But if it is known to lower the CamK, I might have to take another look at it. Of course I am making a big assumption that a high Camk II is causing problems. Just wondering if anyone has any information????

[laurenjohnsonsmom]

Does anyone know if it is generally accepted that CamK II decreases after doing IVIG? How about if the CamK is elevated without the four tested antineuronal antibodies being elevated? I have held off doing IVIG because I just don't understand how it works in the body of PANDAS kids and at this point I feel like it is a 50/50 chance of helping. But if it is known to lower the CamK, I might have to take another look at it. Of course I am making a big assumption that a high Camk II is causing problems. Just wondering if anyone has any information????

 

We tested Lauren's Cam levels through Madeleine C's lab when she was in full exacerbation (sneezing tic 25,000x day) and she was mid-high pandas range. We tested again soon after Lauren's 1st Ivig that successfully stopped the sneezing tic and her Cam level dropped significantly. Wondering if anyone else did this test before and after ivig, esp after significant Improvment in symptoms and got the same results? MC always told me that the cam level correlates with the severity of the exacerbation.

[philamom]

My daughter had a Cam K of 136 in June 2009. It was shortly after a steroid burst with Dr. K. All four Anti-Neuronal titers were also elevated. She had IVIG days later. After six months we tested again, her Cam K was normal and only 2 of her Anti-Neuronals were elevated. BUT, she still had symptoms.

 

Her 2nd IVIG was April 2010.

 

It wasn't until we started treating for lyme (discovered in July 2010) that we really started seeing improvement. But we're still struggling some - setback last 6 months. We also continued with IVIG.

[Worried_Dad]

We did the "Cunningham test" before and after treatment for our ds. His CamK II level was 197 (high PANDAS / low SC range) before IVIG. After IVIG and treatment-dose abx, we re-tested, mostly to confirm the improvement we saw and also because Dr. C felt this would have research value for her. His CamK II level had dropped to 109.

 

Can't honestly say if it was just IVIG that produced the drop, or the "Saving Sammy" dose of augmentin XR, or both. But the level came way down, which was comforting!

[trggirl]

Worried Dad, were symptoms improved? Did he have elevated anti-neuronal antibodies?

 

Lauren's mom, did she have elevated anti-neuronal antibodies as well?

[Fixit]

these are not my findings just thought i would post them

 

http://www2.ub.edu/farmac/recerca/articles%20historic%20pdfs/FelixJunyent.pdf

 

http://www.ncbi.nlm.nih.gov/pubmed/7530878

[trggirl]

fixit, thanks for the links!!

[T_Mom]

Does anyone know if it is generally accepted that CamK II decreases after doing IVIG? How about if the CamK is elevated without the four tested antineuronal antibodies being elevated? I have held off doing IVIG because I just don't understand how it works in the body of PANDAS kids and at this point I feel like it is a 50/50 chance of helping. But if it is known to lower the CamK, I might have to take another look at it. Of course I am making a big assumption that a high Camk II is causing problems. Just wondering if anyone has any information????

 

 

Hi-- I understand holding off on IVIG -- we did that too, (for way, way too long.)

My reason was fear though--

 

I don't know if it lowers Cam K II, but I can tell you IVIG worked miracles in our Pitand/PANS child.

 

Is there a reason that you feel it has only a 50/50 chance of helping?

 

NIH is pouring alot of $ into the study which, quite frankly, would not have been undertaken unless there was a pretty good shot at IVIG having a very real effect on "PANS/PANDAS". From those doctors treating with IVIG all indications appear to be much higher "chance of helping" than 50/50. Have you consulted with any of the doctors that have been using IVIG to treat PANS? All the best--