We Just Got Our CaM Kinase II Results!

[sf_mom]

Our Son's results for CaM Kinase II was 124 'lower end of PANDAS range'... Normal range is 106. He had just completed a steroid burst when his blood was drawn so perhaps lowering his numbers a little. BUT, I am now hopeful that the IVIG will KNOCK any remaining infection out of his brain and rid him completely of lingering symptoms.

 

Had it not been for his Chorea movements his OCD behavior might have been missed and I would have chalked this all up to a lingering illness. Thank goodness I video taped him at his worst.

[ShaesMom]

Our Son's results for CaM Kinase II was 124 'lower end of PANDAS range'... Normal range is 106. He had just completed a steroid burst when his blood was drawn so perhaps lowering his numbers a little. BUT, I am now hopeful that the IVIG will KNOCK any remaining infection out of his brain and rid him completely of lingering symptoms.

 

Had it not been for his Chorea movements his OCD behavior might have been missed and I would have chalked this all up to a lingering illness. Thank goodness I video taped him at his worst.

 

What great foresight to video tape him. I really wish I would have done that at Shae's worst point.

 

Glad to hear the results were on the lower end of the spectrum.

[sf_mom]

I'm fairly certain that the steroids impacted the results. I understand from Diana similar happened to her son. So, my plan is to retest him 6 months and 1 year post IVIG.

 

The video is definitely handy and have showed to every Dr. post illness....... Its amazing to see how far he has come but also painful to watch.

[KeithandElizabeth]

Hi SF Mom:

 

I am curious as to what your son's chorea movements were..... I am still not sure as to what chorea movements look like exactly. I am also sometimes confused as to exactly what is a tic... For instance, my son did, and still does post IVIG, stick out his tongue quite a bit. I think this is a tic?? He also plays with this repeated body movement over and over... I am wondering if this is a chorea movement?

 

elizabeth

[sf_mom]

Elizabeth,

 

I would say sticking the tongue out is definitely a TIC. My son was shrugging his shoulder, tilting head to left and then flicking the back of both his ears with his hands 'multiple tic movement'. He was also grunting mostly while eating, coughing/clearing his throat, talking under his breath, rolling or blinking his eyes, jaw wagging, jaw clicking or shoving the palm of his hand under his chin to make his teeth click. The chorea movement was in the way he shrugged his shoulders 'Dr. told me this after seeing video' and also the non-stop winging of his right arm.

 

I also saw video clip of Susan Swedo talking about Chorea movements. Tell tale sign..... hold both arms out perpendicular to body and fingers will move like they are playing the piano. http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html Also You Tube has some Chorea video clips.... although the ones I saw were more severe than my sons.

 

-Wendy

 

 

Hi SF Mom:

 

I am curious as to what your son's chorea movements were..... I am still not sure as to what chorea movements look like exactly. I am also sometimes confused as to exactly what is a tic... For instance, my son did, and still does post IVIG, stick out his tongue quite a bit. I think this is a tic?? He also plays with this repeated body movement over and over... I am wondering if this is a chorea movement?

 

elizabeth