Cam Kinase Result

[ameecram]

My son's cam kinase result was 110, which Kathy said was close to the control of 101. I'm very new to all of this, so I am wondering if PANDAS can be ruled out. Any information would be welcome and appreciated!!!

[EAMom]

My son's cam kinase result was 110, which Kathy said was close to the control of 101. I'm very new to all of this, so I am wondering if PANDAS can be ruled out. Any information would be welcome and appreciated!!!

 

What is your child's history/symptoms? That's important too.

 

Also, was your son in an exacerbation at the time of blood draw?

 

Any recent steroid use, plasmaphoresis, or IVIG?

[ameecram]

My son's cam kinase result was 110, which Kathy said was close to the control of 101. I'm very new to all of this, so I am wondering if PANDAS can be ruled out. Any information would be welcome and appreciated!!!

 

What is your child's history/symptoms? That's important too.

 

Also, was your son in an exacerbation at the time of blood draw?

 

Any recent steroid use, plasmaphoresis, or IVIG?

 

He doesn't not have a history of strep, his main symptoms are vocal/motor tics and I would say some OCD type tics. He was waxing with tics during the time of the draw. No history of steroid use or IVIG. He has huge problems with food allergies, which I believe are a main influence on the tics.

[EAMom]

110 is pretty low for PANDAS but if you look at Dr. Cunningham's 2006 paper figure 3b http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf there were some PANDAS kids in this range. There were also some regular "tics" kids in this range. So...unfortunately (if you look at the JNI article) your son is in what I would call a "grey zone" where PANDAS cannot be clearly ruled in or out.

 

I would recommend getting a strep throat culture (b/c some PANDAS kids get strep with only tics/behavior changes as a symptom, no sore throat/fever) and also culturing family members to check for carriers. If symptoms suddenly worsen at a later date, that might be a time to re-culture. Also, consider repeating Dr. Cunningham's test if things change/get worse.

 

Have you noticed any changes in tics/behavior when you give your son Advil (motrin, ibuprofen)?

 

I would say it's possible your son is not PANDAS...but cannot say definitively, so I think it is worthwhile to continue to observe and monitor.

 

I should add that our dd never had a "history of strep" either...before we learned of PANDAS b/c nobody ever bothered to culture her (b/c she doesn't get a classic red sore throat when she does get strep). Whenever she was sick (fever etc) every illness was always presumed viral. In retrospect, we realize she probably had several strep infections that were never treated/diagnosed.

[smartyjones]

just wanted to give my thoughts on food allergies and strep . . . not sure what type of allergies and reactions your son is having.

 

last year when trying to figure things out, we were seeing a naturopath who ran an igg food sensitivity panel. it came back highly reactive to over 15 foods - enough that she, who runs that test often, was a little freaked out looking at it. we took him off all those foods and he still is(since Feb). we've had 2 traditional allergists tell us that they don't put any value in that test - they agree that his immune system is producing antibodies to those foods but "so what".

 

i think it's all related. he didn't have any digestive trouble before or after - although i did realize once we took him off milk, that he hadn't been drinking it. i don't see a difference in behavior - he's had exacerbations even while eating gf/df.

 

there was a post on here recently discussing the possibility of an enzyme in the gut that is esssential in digesting gluten and casein that is thought to also bind with strep.

 

there is the possibility that he is celiac and that is the trouble or that he will always have trouble with those foods. i don't think so - i just feel that it is that his body has been thrown into turmoil by the strep and the food issues aren't the root cause but a manifestation of the trouble with strep.

 

once tested for strep, his ASO was 898 and he had a positive throat culture. he had no symptoms. if we hadn't caught it at that time, we may also have said he hadn't had a history of strep for over 2.5 years.

[P_Mom]

I have a PANDAS son whose Cam score was 112.

[sf_mom]

My older son's results were 124 (11 days post 5 day steroid burst) which might have had some effect on results. We are treating very aggressively and just finished his second round of IVIG with Dr. K.

 

At onset he presented with mostly TICs, mild OCD, AD/HD symptoms and mood liability. Today, 4 days post IVIG only mild AD/HD 'talkative' and more tired than usual.

 

-Wendy

[EAMom]

He doesn't not have a history of strep

 

That is a good point (that Smartyjones brought up)...have you ever had your son's strep titers (ASO and anti-danse b ) drawn? If they are low (PANDAS kids can have low strep titers, even those that have had recent strep) that doesn't tell you much. If they are high...your son likely had strep without you knowing it.

 

Do other illnesses (viruses etc) seem to affecct your son's tics? Or just food?

 

Many PANDAS kids seem to react if others around them (family members) have strep...even if they themselves don't get it. So, that is something else to watch for.

 

If your son happens to get H1N1 and then his tics worsen...that would be a good time to send another sample to Dr. Cunningham. Several on this board (including us) have found H1N1 a big non-strep trigger.

 

Has your son had any episodes of urinary frequency? Mood issues? handwriting? emotional lability? Adhd?

 

Can you clarify what you mean by OCD type tics?

 

Any OCD? anxiety? separation anxiety?

[EAMom]

I have a PANDAS son whose Cam score was 112.

 

Hey P. Mom...what are your son's (the one with the 112 Cam) symptoms?

[ameecram]

He doesn't not have a history of strep

 

That is a good point (that Smartyjones brought up)...have you ever had your son's strep titers (ASO and anti-danse b ) drawn? If they are low (PANDAS kids can have low strep titers, even those that have had recent strep) that doesn't tell you much. If they are high...your son likely had strep without you knowing it.

 

Do other illnesses (viruses etc) seem to affecct your son's tics? Or just food?

 

Many PANDAS kids seem to react if others around them (family members) have strep...even if they themselves don't get it. So, that is something else to watch for.

 

If your son happens to get H1N1 and then his tics worsen...that would be a good time to send another sample to Dr. Cunningham. Several on this board (including us) have found H1N1 a big non-strep trigger.

 

Has your son had any episodes of urinary frequency? Mood issues? handwriting? emotional lability? Adhd?

 

Can you clarify what you mean by OCD type tics?

 

Any OCD? anxiety? separation anxiety?

 

 

So do you think the best thing to do is wait until he is sick with maybe a sore throat and go in and have our whole family cultured for strep? We did have the ASO titers drawn a while back which were negative. He does seem to tic slightly more with colds, but I think he starts clearing his throat often from nasal drip and then those habits just stick with him. Like if he is sniffing a lot from his cold, he will keep sniffing after the cold for a little while. We've never seen problems with hand writing, urinary frequency, any type of rages. He may have some anxiety, but it's mostly with excitement or anticipation of things. That is when he mostly tics. Like before we walk into school he clears his throat a few times because he gets excited. Or if a favorite show is about to come on. Both of my boys have colds right now, no sore throat in my son with the tics, should I have us all get throat cultures??

 

Thank you all for your information!