Just got my Cam Kinase results... not sure what I am thinking.

[ajcire]

his score was a 141. the normal age matched score was 101

 

 

 

Ok, I have to admit I don't really even know what this means. I want to call my mom (she is the only person in real life who I have been really getting into details of this with) and she is going to ask me what that tells me.

 

Help... I also want to be able to tell my husband (my pandas doubting husband) what the results indicate and I have no idea.

[Suzan]

his score was a 141. the normal age matched score was 101

 

 

 

Ok, I have to admit I don't really even know what this means. I want to call my mom (she is the only person in real life who I have been really getting into details of this with) and she is going to ask me what that tells me.

 

Help... I also want to be able to tell my husband (my pandas doubting husband) what the results indicate and I have no idea.

 

That shows that he falls into the PANDAS range. My dd8 was 143.

 

BIG HUGS!!

 

Susan

[ajcire]

I thought I would feel better with some confirmation. Instead I feel sick.

[Suzan]

I thought I would feel better with some confirmation. Instead I feel sick.

 

Oh I'm sorry! It is scary but having confirmation, you will have a new direction to take. But it takes time to digest it all. Did you get the paper from Dr. Cunningham that has the chart on it that shows the PANDAS range? That will be helpful to see, especially for your dh.

 

Susan

[matis_mom]

I thought I would feel better with some confirmation. Instead I feel sick.

Same here, I guess before seeing the number in the back of my mind I held hope he was not "that bad," but now with a score of 168, there is no denying it. At least we know where we are standing and can move forward from here. Take courage and lets be thankful that research is being conducted and treatment is available.

 

By the way, does anyone know what the end goal of the Cunningham research is? Are they just trying to have an accepted diagnostic tool, or are they looking into treatment too?

 

Isabel

[ajcire]

Thank you for your kind words. Still not quite sure what I do next. I think I will share this with the ped who was so willing to the do the blood draw for the cunningham test in the first place and work from there. I know it's awful but I wish right now he had more physical symptoms than behaviorial because it would be easier for me to see.

 

 

 

What happens? As kids get "better" do their cam numbers lower?

[faith]

erica,

I always like to ask this question re cam k numbers... do you feel your child's syptoms correlate with the number? in other words, at 141, he's about mid range, would you put his symtoms at a moderate level?

 

same for mati's mom...at 168, do you feel your child's symptoms correlate as being in the upper range, more than moderate?

 

(my son's was 179, I think I was surprised, but I feel only his tics are escalating into the moderate to worse category, and he has all the other issues, altho I'd put them just under moderate, so maybe altogether it does seem he has enough to put him at the high range. but again, his main presentation (the one that is obvious, is tics, vocal and head/neck).

 

thanks

Faith

[ajcire]

Faith, I think I always refer to my son as mild because when I read about other children here he just seems so mild but the part that concerns me is that this draw was done at a pretty good time for him. I am starting to think if I am considering him mild when he is not as mild as I like to believe. Moderate might be more accurate... it's so hard to tell because his symptoms are not so much physical, just a throat clearing tic and sometimes an eye blink. I can't really even explain what it is about my son. He gets irrational, impossible to reason with (gets very stuck on an idea) , argumentative, obnoxious, nasty to his sister (beyond the typical sibling stuff).... But this is all stuff that if I try to explain to someone it sounds like I am making excuses for his bad behavior/my poor parenting. He does have the look though, that pale face, dark under the eyes... just a look that maybe only his mother can recognize. In my opinion he stands out amongst other kids, an oddity that I can't put my finger on... not aspergers at all but yet some traits.... poor eye contact when he's in one of his moods, discomfort when things aren't how he wants it... he is very very bright and often his behaviors have been explained off to me as just quirks of a bright kid but I don't believe that is it.

 

I actually was originally afraid to do the test for fear it would come out low and I would doubt myself and wonder if it was pandas. I am guessing that with his history and cam scores that it is pretty safe to say he has Pandas.

 

erica,

I always like to ask this question re cam k numbers... do you feel your child's syptoms correlate with the number? in other words, at 141, he's about mid range, would you put his symtoms at a moderate level?

 

same for mati's mom...at 168, do you feel your child's symptoms correlate as being in the upper range, more than moderate?

 

(my son's was 179, I think I was surprised, but I feel only his tics are escalating into the moderate to worse category, and he has all the other issues, altho I'd put them just under moderate, so maybe altogether it does seem he has enough to put him at the high range. but again, his main presentation (the one that is obvious, is tics, vocal and head/neck).

 

thanks

Faith

[faith]

erica,

I understand what you say re mild, my feeling is that when you've dealt with this a while, you kind of 'get used to it' and so when they 'spike' or 'wax' on tics, then you think its worse, and if they go back down to 'what you're used to', then it seems more mild. so maybe mild, moderate, severe, is kind of relative. when we compare to others we know of here. Really I had no idea the symptoms went beyond tics and ocd until a couple months ago.

 

I still don't really like to say because of the cam k numbers that they "have" PANDAS, I feel its more of an indication that is in the study stages, and that they have a marker that seems to fit into their theory. Dr. T. does explain that you can't really definitively diagnose PANDAS, for it is a criteria of symptoms over time and its like diagnosing tourettes or any other spectrum disorder.

 

 

Faith

[ajcire]

Yes Faith, I am afraid that to me he is mild because it has become our normal. Ack!