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Cam Kinase Results


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The last time she was on steroids was December 2008. She was in (and still is in) an exacerbation when the test was done. Her exacerbations consist of neck and eye tics (and non stop playing with her hair, but we are not sure if this is normal for a 12 year old girl). She does not get OCD with this or behavioral changes.

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Debbie, as you know my son's score was only 124 'lower range PANDAS' but blood was drawn 11 days post 5 day steroid burst. We made the choice to still pursued IVIG based on those numbers to potentially rid him of any hidden bacteria in his body, give his immune system a break from potentially further infections and kinda reset his system.

 

Anyway, a score of 137 is not extremely high.......... BUT, again my thought has always been to hit it hard on the front end so potentially he may never have another episode.

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We just got results from the lab. Our dd's Cam Kinase was 137 - the lower quadrant of the PANDAS positive group. Can anyone explain what this means?

 

Thanks,

Debbie

 

It means your dd's got PANDAS (vs. non-Pandas tics such as tourettes.) The non-PANDAS tics kids that Cunningham looked at had an average Cam kinase of 88 (range 50-110). This is from the 2006 JNI paper figure 3b http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

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Anyway, a score of 137 is not extremely high.......... BUT, again my thought has always been to hit it hard on the front end so potentially he may never have another episode.

 

SF Mom,

 

I agree on treating this aggressively, especialy since we have suffered with this for several years now. I just have to get the doctor to agree!

 

Debbie

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Debbie,

 

I know Dr. Kovacevic will treat based on those numbers and clinical picture. Don't give up on the possibility for your daughter... as the tide with the Medical Community is about to turn for PANDAs but unfortunately you don't have time to wait until that happens.

 

-Wendy

 

Anyway, a score of 137 is not extremely high.......... BUT, again my thought has always been to hit it hard on the front end so potentially he may never have another episode.

 

SF Mom,

 

I agree on treating this aggressively, especialy since we have suffered with this for several years now. I just have to get the doctor to agree!

 

Debbie

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Wendy,

 

We have not yet seen Dr. K., but I know he is an option if we feel we need it. Right now we are on a 1 month course of steroid from Dr. L. and waiting to see how it works. I called her office last Friday after we had a setback last week. Have not yet heard from her. I also have not yet discussed the Cam Kinase results with her to see how she wants to proceed.

 

Thanks for the words of encouragement!

 

Debbie

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Debbie,

did you see Dr. L in person and then she presribed the steroid? were you on abx first at any time? so Dr. L went right to steroid, and no abx? (or had you done that already)..... btw, what have you seen so far with the steroid?

 

I am wondering (if anyone would know or think), should I try to get a trial of abx before I get cam kinase results back and/or before we see Dr. L in about 3 weeks? (but who's gonna give me a 3-4 week supply?) Being that we've not done any treatment in this respect, it will be like starting fromf scratch for us, so wondering if it would be could to have this trial under my belt befor I get there. or is that risky, and I should wait to see what she has to say?

 

thanks

Faith

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If you can get them, I would do a Azith. (or a high dose of Augmentin) for 4 weeks b-4 you see Dr. Latimer.

 

Otherwise, you can tell Dr. Latimer you want to try 1-2 mo. of antibiotics 1st before adding on steroids. I think that would be a very reasonable thing to do.

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Hi Faith,

 

We did see Dr. L. in person at which time she prescribed the steroid. Prior to seeing her, my dd had been on prophylactic amox for 9 months and had a prior steroid burst in December 2008 prescribed by a local neurologist. The December 2008 steroid burst was very successful - she was completely symptom free for six months.

 

This time around, we are having a harder time with the steroid. By day 7 we had seen noticeable improvement. On day 8 we reduced the dose as directed. Days 8 and 9 were the same as day 7. By day 10 she was having a setback. Just yesterday (day 14), she seemed to be showing improvement again, but today we had to reduce the dose again. I hope we don't have another setback with the dose reduction, but I am bracing for one. I have a call in to Dr. L., but have not heard back yet.

 

We got our ped to prescribe the initial antibiotics. We started with a treatment dose and saw results by the end of the 10 day course.

 

Debbie

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