CAM Kinase II Back and 176 . .

[mom23boys]

I posted last week about my son's strep titer results - 1:480 for ASO and 1:1920 for Anti DNase B . His Cam Kinase II came back today and is 176.

 

 

Not surprised as my sister (mdmom) guessed today he would be above 160 . . .

 

Good news is that his only symptom (eye blinking tic) is GONE after 5 days of Azith. It will be interesting to see what happens when he stops the antibiotic . . . my sister's prediction is that his titers will still be elevated as it is the immune response causing the tics not the strep. Her guess is that the azith is working because of the immune modulating properties. This is based on the fact that her son showed no improvement on any antibiotic except azith and has required plasmapheresis and IVIG to get to where is now (vastly vastly improved).

 

His symptoms were much much more severe than my son (his cousin's) so I am holding out hope that we don't have to go down that road.

 

Thank goodness for all her knowledge on this - I am still struggling to understand it!

 

Thought I would keep you updated as there seem to be several of you with familial links.

[thereishope]

How long did he have the eye blinking tic for before you realized PANDAS?

[mom23boys]

He started the eye blinking tic a few months ago, but before that it was rubbing his nose, and before that he was licking his lips (may or may not have been a tic.).

 

The nose rubbing and eye blinking started at the beginning of the school year. He changed schools (3rd grade) so we thought it was just that. His pediatrician does NOT believe in PANDAS at all, and said transient tic.

 

If I didn't have a nephew with PANDAS diagnosed by Dr. Lattimer I would still be thinking it was transient childhood tics or possibly Tourette's . . .

[EAMom]

Welcome MomMd's sister! Wow...interesting! Thanks for posting. I'm glad your son's symptoms are mild and quickly resolving with Azith. Makes you kind of wonder how many "transient childhood tics" are actually PANDAS....

Edited April 2, 2010 by EAMom

[peglem]

Welcome MomMd's sister! Wow...interesting! Thanks for posting. I'm glad your son's symptoms are mild and quickly resolving with Azith. Makes you kind of wonder how many "transient childhood tics" are actually PANDAS....

I wonder that, too. But also, I wonder if PANDAS actually is a normal, transient reaction to strep that most kids get over, but for our kids, for some reason it goes chronic.

[EAMom]

Welcome MomMd's sister! Wow...interesting! Thanks for posting. I'm glad your son's symptoms are mild and quickly resolving with Azith. Makes you kind of wonder how many "transient childhood tics" are actually PANDAS....

I wonder that, too. But also, I wonder if PANDAS actually is a normal, transient reaction to strep that most kids get over, but for our kids, for some reason it goes chronic.

 

good point. Goes chronic....or severe, spiralling out of control.

Edited April 2, 2010 by EAMom

[mom md]

Welcome to the club!!! No offense, but glad to have you in it. I did want to add the point that many might find interesting...our great aunt had Sydenham's chorea, our grandmother had scarlet fever, our mother and I both had scarlet fever, my sister (mom23boys) had post-streptococcal glomerulonephritis as a child, and now our kids have PANDAS. Not a coincedence I am sure. Does not seem as if we come from such great stock now does it!

Actually though, we both may be the PANDAS success stories of how you can learn to live with it. We both used our OCD tendencies to get though a lot of schooling!

[MMC]

Autoimmune issues certainly can be genetic. Both our kids have PANDAS. I was diagnosed with Sydenham's at age 7...was really more like PANDAS, but this diag was not around back then. Sister has always had minor tics since I can remember, and maybe some ocd. Her daughter has Crohns. Father had rheumatoid arthritis. Cousin has really bad rheumatoid arthritis. These are all autoimmune conditions. I'm already worried about potential issues with future grandchildren.