cam kinase 11

[bmom]

I just received my son's cam kinase 11 score. It is 150. Those of you that have had the test done, could you post the score and symptom severity of your child? Thanks.

150- sons symptoms run from mild to moderate

[faith]

cam k ..... 179

 

main symptom is tics, vocal and head/neck/eye. He does have the other miriad of symptoms, sep.anx./ocd/sensory/irritability/agigation/meltdown, but I would put them as secondary.

 

I guess I'm a little surprised at our high range score, but maybe its because his tics have moved from mild to moderate as he aged. (first symptom at age 3 and is now 10).

 

If I had to say, I'd put him moderate on tics and mild to sometimes moderate on the secondary symtoms/behaviors. (except for attention/focus, I'd say moderate + ?.....that has been declining, kind of a late onset of ADD.)

 

 

Faith

[mama2alex]

My son's score was 153. No tics, but OCD and separation anxiety, and many other things that go along with this. Not sure how to characterize it - to us it feels severe, but in the big scheme, it's probably moderate. He can still attend school and hold it together, although he usually won't eat there.

[peglem]

CamK- 242%

 

Symptoms very severe. Crippling OCD, which seems to gobble up everything she has ever enjoyed- That's the most prevalent thing. She has bizarre movements- don't know what they are considered, but a weird "windmill" kind of dance w/ perfect rhythmic repetition that she completely does not have the motor coordination to do voluntarily, and when she does it she gets this "manic" look on her face. She does have some tics swallowing seems to often trigger a neck jerk....well there's lots more...frequent "fight or flight" type rages.....lost speech several years ago.

[dut]

Our dd6's score was 165%. At the time of the draw she was symptom free and still is a few months later. Our ds2 had a score of 151% and we are currently trying to work out if he is symptomatic or not with a steroid burst.

 

For our dd, when she was in exacerbation, it was moderate OCD,very mild tics and behavioural changes, such as being combative, defiant, emotional. Although to us they felt huge, reading some of the posts on here, I think the behaviour changes were only moderate. Cognitive skills and drawing etc took a nosedive and we had disturbed sleep and quite a lot of sensory issues.

[NVAmom]

I just received my son's cam kinase 11 score. It is 150. Those of you that have had the test done, could you post the score and symptom severity of your child? Thanks.

150- sons symptoms run from mild to moderate

 

Hi, my son's score was 156, however, he had been on Augmentin 250mg /day for about 5 weeks prior to the blood draw. I would say at the time the blood was drawn his symptoms ranged from mild (tics) to moderte (anger outbursts, fine motor and gross motor chagnes, attention). Hope that helps.

[FallingApart]

Our second test was 189 and we have every symptom. All of our symptoms are extremely severe with the exception of tics. They are mild.

[Suzan]

DD7 - 118% at the beginning of an episode. Her symptoms were serious age regression, fears of death and dying, anorexia and mild OCD. She responded very well to daily dose of zithromax and it resolved most of her symptoms.

 

DD8 - 134% at the beginning of an episode. Her symptoms at various times are raging, seperation anxiety, fears, worries, facial grimacing, grunting, huffing and puffing, refusal to do anything asked of her, emotional outbursts, control issues, sensory issues, acting like a dog, probably all realted to OCD. She responded to daily dose of zithromax in the beginning but it did not resolve her symptoms ongoing. I like what the other poster said about combative, defiant and emotional. That really does a great job of describing my dd.

 

Susan

[Kayanne]

DD6 --- CamK II was 112

 

I had ber blood drawn on Oct. 20 -- she was and is not showing any signs of PANDAS right now. So her low score does correlate with where she is.

 

We decided not to draw her blood in June because we were going to start prednisone, and Dr. Latimer told us we should postpone the treatment until her blood was drawn...we didn't want to wait.

 

Looking back (20/20) If I had known how responsive the Cunningham lab was, I don't think waiting a few days for the kit to come in and have a blood draw done would have made any difference now.....Just some FYI for anyone who might find themselves in the same situation.

 

~Karen

[sf_mom]

DS 5 1/2 - CaM Kinase 124 (11 days post 5 day steroid burst). Mood liability, Multiple TICs: Head tilting, chin wagging, arm wigging, flicking back of ears, coughing/clearing throat, grunting, OCD: contamination fears, lengthy bedtime ritual, hand washing, etc. Separation Anxiety

 

DS 2 1/2 - CaM Kinase 148. Mood liability, OCD: Only wants to wear red, eat things with red wrappers, drink from red bottle, play with red cars. Unfounded fears especially at park and doesn't want to engage with other children 'stand on the sideline watching'. Tiredness, Separation Anxiety after he was recovering from last flu... wanted to be held nonstop.

 

-Wendy

[memom]

DD17 156. Severe OCD and Choreaform movements. No tics.

[Buster]

DD9 -- 183 (baseline)-- separation anxiety, verbal tic, defiance

 

253 (exacerbation) -- significant exacerbation, contamination fears, motion abnormalities, verbal tic, lashing out, skipping meals

 

119 (post-IVIG) -- some residual separation/social anxiety, no other symptoms.

[dee45]

Anthony's level 145 tics vary mild to moderate.

 

Deanna

[Megs_Mom]

DD8, 7 days after antibiotics started, near end of "natural" cycle, symptoms resolved 80% before draw = 133. Still separation anxiety, OCD (contamination fears, scrupulosity, perfectionism) and Sensory Integration Disorder - was able to go to school, camp, play with friends at this time. (onset was Severe OCD, Sep Anx, Panic, Agoraphobia, sensory integration, depression).

[EAMom]

DD9 -- 183 (baseline)-- separation anxiety, verbal tic, defiance

 

253 (exacerbation) -- significant exacerbation, contamination fears, motion abnormalities, verbal tic, lashing out, skipping meals

 

119 (post-IVIG) -- some residual separation/social anxiety, no other symptoms.

 

I should add that our dd was on long term Azith for all of these blood draws. I think if she wasn't on the Azith. symptoms would have been off the charts.