High cam kinase in absence of elevated ASO, antiDNAseB?

[Phasmid]

My son's blood just left the dock for cam kinase test. He hasn't had elevated ASO or other strep indicator. Curious if any of you have had pos. cam kinase without high titers?

[Kayanne]

My DD did have elevated titers. However, there are many who didn't get a titer rise, and were still in the PANDAS range for CamK.

 

ASO and AntiD-nase strep titers tests are testing for antibodies that are produced against a strep toxin...these antibodies are not the ones that are cross-reacting with the basal ganglia.

 

While the titer tests can be helpful to determine past or present strep infection, they do not indicate if one has PANDAS or not.

[Phasmid]

Thanks!

 

 

My DD did have elevated titers. However, there are many who didn't get a titer rise, and were still in the PANDAS range for CamK.

 

ASO and AntiD-nase strep titers tests are testing for antibodies that are produced against a strep toxin...these antibodies are not the ones that are cross-reacting with the basal ganglia.

 

While the titer tests can be helpful to determine past or present strep infection, they do not indicate if one has PANDAS or not.

[peglem]

My daughter's CamK activity was very high, never had high titers and was, I guess, a strep carrier.

[EAMom]

My dd has NEVER had high titers (ASO/anti-dnase B ) despite testing, at the "right time"- 2mo. after fever/onset of strep infection/untreated strep for 2mo./positive culture in Spring 08.

 

When we did our first Cunningham test (April 09) we also measured her ASO (just 'cause the doc was interested). Her ASO was 17 (undectable) while her CaM kinase ll came back in the high PANDAS range.

Edited June 3, 2010 by EAMom

[JAG10]

My dd has NEVER had high titers (ASO/anti-dnase B ) despite testing, at the "right time"- 2mo. after fever/onset of strep infection/untreated strep for 2mo./positive culture in Spring 08.

 

When we did our first Cunningham test (April 09) we also measured her ASO (just 'cause the doc was interested). Her ASO was 17 (undectable) while her CaM kinase ll came back in the high PANDAS range.

 

 

EAMom- We know w/i range ASO/DNAseB titers do not r/o PANDAS just the same as above range ASO/DNAseB titers do not dx PANDAS. But the PANDAS docs all seem to see significance in extremely raised ASO/DNAseB, like over the 99%ile, titers over 1300-7000. Do you know why that is deemed significant for PANDAS?

I wonder when we get to the day where subtypes of PANDAS can be diagnosed, if it will be by symptomology or by biological markers such as elevated titers or not?

[trggirl]

We have high CamK without elevated titers in anything else.

[EAMom]

My dd has NEVER had high titers (ASO/anti-dnase B ) despite testing, at the "right time"- 2mo. after fever/onset of strep infection/untreated strep for 2mo./positive culture in Spring 08.

 

When we did our first Cunningham test (April 09) we also measured her ASO (just 'cause the doc was interested). Her ASO was 17 (undectable) while her CaM kinase ll came back in the high PANDAS range.

 

 

EAMom- We know w/i range ASO/DNAseB titers do not r/o PANDAS just the same as above range ASO/DNAseB titers do not dx PANDAS. But the PANDAS docs all seem to see significance in extremely raised ASO/DNAseB, like over the 99%ile, titers over 1300-7000. Do you know why that is deemed significant for PANDAS?

I wonder when we get to the day where subtypes of PANDAS can be diagnosed, if it will be by symptomology or by biological markers such as elevated titers or not?

 

don't really know...maybe b/c b-4 Dr. Cunningham's research, "strep titers" was all they had to go on. So a lot was read into it (esp. super high numbers) since that was the only number they had that might mean something.

 

I have heard that some strains of strep don't give much of a titer rise, so how high the titers get might actually not mean too much. Eg. there might be strains of strep that don't trigger PANDAS, yet these same strains might still result in very high ASO/anti dnase b . ANd vice versa...there are probably PANDAS strains of strep that don't cause much in ASO/anti-dnse elevation. Of course, how high the titers get depends on the person too...in our case there wasn't any correlation between titers and PANDAS/CaM kinase.

 

In an exacerbation, my dd (who has always had low titers) had a CaM kinase that went to 253...the highest Dr. C. had ever seen (above even the high SC range). She was in the high PANDAS range when she wasn't in an exacerbation.

[JAG10]

WOW! That sounds scary and must keep you up at night!!

 

I think it is Dawn's family that have recently tested with the crazy high DNAse B's 3000-7000, I think. Drs. K and T were both floored and very concerned if i remember correctly. I think they are waiting to be retested soon. It means something, just not sure what. Maybe it is a particularly nasty strain of strep indicator.

[Phasmid]

okay, now I am very happy that I had blood drawn on him today for cam kinase. Now I need to find more stuff I can sell on Craigslist to pay for it!

[tapiash]

okay, now I am very happy that I had blood drawn on him today for cam kinase. Now I need to find more stuff I can sell on Craigslist to pay for it!

 

My sons titers were all normal. All the results from Cunningham were high except one. I never thought about selling stuff on craigs list. Thanks for the idea. Pandas is very expensive illness. I cannot wait until doctors and insurance companies believe this is a true illness.

[Suzan]

We have high CamK without elevated titers in anything else.

 

Us too.....

[tpotter]

My older son also had normal ASO levels, which is why we didn't know it was PANDAS when we first tested it. Then we got the CaMK results back....and it was high

[T_Mom]

We have high CamK without elevated titers in anything else.

 

Us too.....

 

 

We had the same--Cam Kinase High Pandas 181, nothing else elevated. (Except for the OCD symptoms and raging!) --incredibly GONE now after 5 months of Augmentin SS dose.