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I just got the CamK results back on my youngest son who i have suspected of having very mild PANDAS. He has become moody, bad temper, mild ODD. He has mild tics for the past 3-4 months.

His score was 179.

 

Now his older brother who has the OCD. Sep anxiety, tics rages, ODD, ADHD. His score was 151.

 

Is this normal to have a higher cam score then another whose symptons are so much more pronounced. I was not expecting such a high number and am worried as to what can happen now. We are seeing his Dr. today ( he woke up with a sore throat)

 

anyonoe else see this in their kids?

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I just got the CamK results back on my youngest son who i have suspected of having very mild PANDAS. He has become moody, bad temper, mild ODD. He has mild tics for the past 3-4 months.

His score was 179.

 

Now his older brother who has the OCD. Sep anxiety, tics rages, ODD, ADHD. His score was 151.

 

Is this normal to have a higher cam score then another whose symptons are so much more pronounced. I was not expecting such a high number and am worried as to what can happen now. We are seeing his Dr. today ( he woke up with a sore throat)

 

anyonoe else see this in their kids?

 

i wonder if as you get older you would have a lower camk even with equal conditions.

 

that's why i like that doc k. just goes by history...he doesn't care about the cunningham score...

 

ds first draw was 105...he was better than onset but not healed..and normal was 87..if it's not normal then something isn't right..(canceld apt with doc L as i thought i would be dismissed...when i saw her recently she said still thought his numbers were interesting..esp.dopamine1)

 

second draw..i was praying for at least 120 so people would't think i was full of it(isn't that sad)as i was already expecting it since EVERY doc i've seen prior has rolled their eyes when i'v mention my conection with ds getting sick and ticcing...

anyway ...score was 160

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i guess age could have something to do with it. oldest is 15 ( symptons for 8 years) youngest just 7.

Maybe it has to do with what treatment they have received so far? DS had been on abx for a couple of months before we tested. Still, CamK168. I just asked for a kit for dd, we'll see what turns up. I so don't want to accept it, but I can't sit here and wait for her to have if full blown!

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I just got the CamK results back on my youngest son who i have suspected of having very mild PANDAS. He has become moody, bad temper, mild ODD. He has mild tics for the past 3-4 months.

His score was 179.

 

Now his older brother who has the OCD. Sep anxiety, tics rages, ODD, ADHD. His score was 151.

 

Is this normal to have a higher cam score then another whose symptons are so much more pronounced. I was not expecting such a high number and am worried as to what can happen now. We are seeing his Dr. today ( he woke up with a sore throat)

 

anyonoe else see this in their kids?

 

My 6 year old daughter's CamK was 179, and the only ANA elevation was anti-dopamine 1. My daughter's Pandas seems on the mild side compared to some that I've read. Her main symptoms have been tics, some OCD and irritability.

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Our son in on the mild side, mostly tics, separation anxiety, and mood. Doctor wanted to dismiss it as low iron, but Cam K came back a 175. Doctor stil won't treat with anything but abx, so we are going to see Dr. L next month.

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Please remember that elevated CaM Kinase can also be an indication of Lyme Disease/co-infections. I am sure Madeleine Cunningham noted this on your results.

 

In our situation, all three of our children have elevated CaM Kinase with a variety of symptoms. We had a classic on-set with a strep trigger for our older who presented with mostly tics. He is/was responsive to PANDAS treatment. We have since discovered congenital Lyme is the real issue for our family and are treating all three children, plus myself and will be testing my husband in the near future. Early intervention with proper antibiotics can stop the immune system failure (sudden on-set) from occuring.

 

I highly recommend you look into the possibility of congenital LD by testing the mother via Igenex Basic Western Blot ($260.00). You can be a symptomless carrier for years. Your children my not make antibodies for Lyme so would not register positive on any typical antibody testing (ELISA/Western Blot/Igenex, etc). In this situation, DNA testing is more appropriate and a good LLMD referred through ILADS can help determine proper testing for all of your children.

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I have mentioned several times about testing for lyme and dont get a great response. we see the dr. again in a few weeks and if she wont do it i will look into getting it done by someone else.

 

nancy here are the antibody titers

anti lyso-320

anti tubulin 250

anti dop 1 2000

anti dop2 2000

 

these are for my 15 yr old. cam number is 151. dont have the antibody titers for my youngest.

Robin

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