TS and Cam Kinase

[Fixit]

 

On another note...I have to wonder if the Cam Kinase dies out with puberty/age...just like PANDAS is supposed to die out or dramaticall improve??!! As well as the other antibodies she tests for....so, if I send in my sample......would it still show high levels?? (If I ever had them) If not... it could just mean they "disappeared" with age......right? I don't know... any thoughts?

 

 

thats what i think also for probably all spectrum cases.....on a note...my husband's blink/twitch trully subside by the end of a round of antibiotics..probably needs them long term......i would like to test him as well....he and the son i am worried about had a couple of years where they caught strep by looking at them....now i think my boy's bbb is so pourous it's suseptible to anything

[EAMom]

BMom,

 

Nno, I don't believe IVIG should effect the results.....atleast it hasn't for a few kids who had it done after IVIG...they still scored in PANDAS range.

 

IVIG affected our results. In April we scored in the high PANDAS range (not in an exacerbation 183), in July we were in the high SC range (in an exacerbation after the flu, 253). Just before IVIG in August, we were back to the high PANDAS range at 170 (exacerbation halted the month b-4 with 6 days of steroids).

 

7 weeks after IVIG we were down to 119 (low PANDAS range).

 

btw CaM kinase ll scores did seem to correlate with symptom severity for us.

 

So, from our experience, both steroids and IVIG can affect Cunningham test results....don't know if this is true for everyone though.

 

I think most of the kids that got tested post IVIG were still symptomatic, so perhaps their IVIG wasn't a complete sucess (and thus the values were still high). Or they had IVIG but then another strep infection/exposure that re-elevated values. Or, maybe the values were lowered with IVIG, but not enough to get them out of the PANDAS range.

 

I don't believe antibiotics affected results for us...we were on 250mg Azith once daily the whole time, except for the week before the first draw, we were on 125mg/day.

[EAMom]

about 3 weeks

[P_Mom]

Power Of Prayer......we got our Cam Kinase results back in about 2 weeks....the other results took about a month....but, I think so far the Cam Kinase is the most important of the tests. I know another Mom who waited a month for the Cam results....I think it all depends on when the serum is received and how close they are to running another batch. It should not be longer than a month.....hopefully!

 

Please let us know your results when you get them!!

[P_Mom]

EA Mom...do you consider your daughters IVIG a complete success?? Is she symptomatic at all? Or is it too early to tell........hope it works!

 

Kelly

[EAMom]

EA Mom...do you consider your daughters IVIG a complete success?? Is she symptomatic at all? Or is it too early to tell........hope it works!

 

Kelly

 

Mild tics (throat sound) remain...but I don't think I've heard them this week so maybe those are gone too. Some social anxiety (mild) remains...I'm not sure if that's all PANDAS though. She still dosn't love math, but it is getting easier. Her handwriting is off/on but mostly better. She's still a bad speller, but the spelling issues might not be from PANDAS, hard to say. No more "measurement compulsions" or weird rages. No more meltdowns. Eating fine. She really seems pretty good overall.

 

I'm keeping my fingers crossed. Who knows what will happen if she gets sick or exposed to strep?

[P_Mom]

Thanks....that is good to hear. Please keep us posted on her progress!

[powerofprayer]

Ok the CamKinase came back yesterday. My dd (6yo) whom I NEVER thought of as PANDAS b/c there is no OCD, anxiety, rages, etc.... her ONLY symptom is tics. And those are even minimal right now. However hers was 175 which Kathy says is in the "upper half of the PANDAS group". So now what? Do i assume she IS truly PANDAS are start pursuing a provider that will understand these results? Or do i wait for the other results? I am hesitant to start a course of antibiotics since she is very mild right now anyway. Even when her tics wax, there is NEVER any OCD, rages, anxiety, or any of the other issues PANDAS parents discuss.

OK, now MY own score was 100 which Kathy said is "that of a normal patient". I assume she just means a non Pandas patient. I DO have what i would say are moderate tics most of the time. Can anyone draw any conclusions from these scores?

I really was expecting our scores to come out relatively the same........but they are not and that's what mainly confuses me. for the past two and half years (onset of tics for dd) I assumed since I have TS, then she was/is headed down the same path. I dunno.......just thinking "out loud" now. I sent some Q's to Kathy and she said she'd have Madeleine answer them. I will also post this on the Pandas board.......lots of ppl seem very knowledgable about this research there and i don't know if they visit the tics/tourettes board.

Thanks for any insight you might provide!

[P_Mom]

Hi Power of Prayer....I have a PANDAS son who only tics.....no ocd, rages, etc. PANDAS can present in so many ways......... Interestingly, the Cunningham study says that the children who present with isolated tics TEND to score higher on the Cam Kinase.

 

Although this did not hold true for my son....Cam Kinase of 112. (younger son with ocd/tics, etc. 162)

 

Hope you find the answers you are looking for.....yes, post this (your above post) on the PANDAS forum.

 

Kelly