CamK score

[GraceUnderPressure]

We have our followup appt in Dallas next week & I called to see if the Cunningham test results would be ready for us this time. Happily, they are there!

 

I asked what the camkinase result was & they said 146. I realize that the other results will give a fuller picture of what is going on with my ds18, but wanted to know what limited info this cam k result can tell us?

 

(Sorry, I did a search, but couldn't find the info that I am sure has been discussed here umpteen million times already)

 

~Grace

[fuelforall]

Middle level Pandas. My son scored lower but he was still in the range.

[GraceUnderPressure]

So is this in itself enough to confirm that my ds18 has PANDAS (or a PITAND)?

[Phasmid]

Researchers have not made it clear the clinical significance of an elevated CamK activation. Until the data is analyzed, and results are published, and there has been proven reproducibility of the results by other investigators, we cannot really say what it means, in all honesty. Right now, these numbers are "data" only.

 

 

[KaraM]

I think it is the icing on the cake in terms of diagnosis. If you have the clinical symptoms (i.e. OCD/tics/etc.) and relatively "sudden onset" the C test be one more piece to the puzzle. Throw in a postive strep test and your golden (but I know a lot of us don't have that part).

 

When we saw Dr. B for the first time, our dd7 had started exhibiting PANDAS symptoms slowly over the course of three months or so - than bam, she couldn't get dressed due to contamination fears. She had a negative throat culture. A few months later, we did a blood test. It was only slightly elevated. We did the C test and her Cam score was 189. After hearing her history, Dr. B. said it was possible she had PANDAS. When I told him we had already done the C test and what her Cam Score was his eyes widened and he said he was confident she has PANDAS.

[eljomom]

KaraM--My daughter sounds more like you---with symptoms slowly building, then bam--explosion of tics. Her cam was 168---that wasn't enough for Dr. L to be confident. Based on her handwriting being okay and no chorea....

[KaraM]

For comparison purposes, my dd's major symptoms were:

 

OCD/germ contamination fears with avoidance rituals. - some washing and holding saliva, too.

Major rages and mood swings, some fight or flight.

 

Some minor symptoms:

A little bit of separation anxiety - but more about leaving home than me.

Her social skills deterioriated

Her handwriting did not change very much - maybe a little. Her artistic skills weren't as strong - but still not a huge difference.

Her math skills seemed a little weaker, too (still do). But again - not a dramatic difference.

She had no tics or Chorea movements

Her Cam score was 189

 

She's doing very well now on prophylactic Zithromax.

 

 

KaraM--My daughter sounds more like you---with symptoms slowly building, then bam--explosion of tics. Her cam was 168---that wasn't enough for Dr. L to be confident. Based on her handwriting being okay and no chorea....