Cunningham tests

[dut]

Hello

 

I just wanted to know how many, if any, kids were coming back with PANDAS range scores but no symptoms either ever, say if a sibling of a PANDAS child is getting checked maybe or a high score for a PANDAS dxd child while not in exacerbation?

 

 

(Still trying to work out what is going on with our ds2.....)

 

thanks....

[P_Mom]

yes, we had a score of 162 while not in exacerbation....only VERY mild symptoms.

[monarchcat]

Hello

 

I just wanted to know how many, if any, kids were coming back with PANDAS range scores but no symptoms either ever, say if a sibling of a PANDAS child is getting checked maybe or a high score for a PANDAS dxd child while not in exacerbation?

 

 

(Still trying to work out what is going on with our ds2.....)

 

thanks....

 

Well, our case is not exactly what you are looking for, but I think it still demonstrates that CamK score and level of symptoms are not necessarily correlated. I had my ds(8) tested in August, when I suspected PANDAS. At the time I deliberated doing the test because I didn't think he was in an exacerbation, although there were some tics and some minor behavior/mood issues. His score was 193, which is at the top of the PANDAS range and lower end of the SC range (3 out of 4 anti-neuronal anitbodies were high as well).

 

So there WERE symptoms, but nothing that would indicate to me that he would have such a high score. Even in an exacerbation his symptoms are much more mild than others on this board. I believe it has to do with the integrity of the blood brain barrier. The antibodies might be circulating in the blood but not reach the basal ganglia if the BBB is intact. There are probably other factors, as well, that they just don't know yet!

 

On the flip side, we had him re-tested after a 30 day course of steroids and 2 months of antibiotics. His score at that time was 136, but his tics were worse than ever and we were seeing flare-ups in mood/irritability, but he was sick around that time... so the BBB could have been breached allowing the antibodies to do more damage. At least that's how I understand it....

 

Oh, also it seems as though PANDAS kids who present more with tics have a higher CamK, which would make sense because the higher you go, you get into the SC range, which is primarily a movement disorder. I think PANDAS kids with more OCD plot more toward the middle, unless I am mistaken. So, again, not necessarily an indication of symptom severity at all.

[dut]

Thanks for the responses

 

I, too, think BBB integrity is the key. Our dd6 had a CaMK score of 165% with no symptoms at all at the time (when in epsiode she has ocd,low level tics, choreiform movements and lots of behavioural stuff). Our ds2.. not sure whether we see symptoms or not - certainly some sensory processing stuff and sleep issues maybe more - came back at 151%.

 

thanks again