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Posted

Hi -

 

my dd6 (PANDAS dx) had a CaMK of 165%, 1 upper limit normal range antineuronal antibody and 3 within normal.

The test was done when she was symptom free.

She had a raised anti lysoganglioside on a different test, the year before, at the end of an episode.

 

My possible PANDAS ds2 had a CaMK of 151% and a raised antilysoganglioside in a possible mild episode.

 

We think our dd had a raised CaMK but no symptoms 'cos of a return to better BBB integrity.

 

My question is - does anyone know of other reasons why the CaMK can be elevated?

 

I have no doubt that my dd is PANDAS but still trying to work it all out for our ds. I should just let it lie.. if it looks like ***t and smells like ***t, then it's ***t.

 

Thanks :-)

Posted

Dut- does the child have ANY symptoms? Is he quirky? shy? anxious? Really, you wouldn't do anything if there are no symptoms.... but, you could have a consult with your pandas treating doc. I would get a doc on board to prescribe antibiotics and a steroid burst (as long as no tics) immediately, if you see him have an issue post illness in the future.

Posted

Thanks for the responses..

 

dcmom - yeh, I have seen signs with our ds2 that prompted our great ped to offer abx to him. I wasn't ready at that stage so we did the cunningham test. We then did a steroid burst and we saw some behavioural improvements but the best improvement was in sleep.. waking 8+ times a night, down to none in 5 days.

 

He's currently on proph zith. I think he is PANDAS but just trying to look at all angles. I just keep thinking (maybe in a "first degree relative with sub clinical ocd" kind of way) if the proph zith does it's job and keeps the trigger at bay we may never really know if he is PANDAS or not. Equally, I don't feel like taking him off the abx anytime soon to test my theory!!

 

I should just let it lie and enjoy the good times we are having with both kids (dd6 symptom free :lol: and ds2 doing fine, with the exception of his sleep). If Madeleine Cunningham can continue her research, perhaps we'll have a definitive test in a few years...

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