research data questions

[norcalmom]

Question for you techies out there. Is there any data that suggests that kids can have genetic disposition for pandas, exposure to GAS, and an intact BBB? I was thinking about the cunningham tests and I would htink that there would be kids whose blood would show pandas levels, but they would not have any symptoms, if indeed a "leak" in the BBB is one of the 3 things needed to manifest the condition. Unfortuately the link from Buster's section on the pandasnetwork no longer works to this paper (fyi Buster), so I can't see if athere were any results like this.

 

She would need to test normal human sera with known GAS infection. I know she tests NHS, but I don't think a prior GAS infection is included...and I doubt the sample rate was large enough in original study.

 

Also wondering if she is testing pandas kids treated with antibiotics vs not treated (at least not prophylactically) to see if we can get some data on reducing camKinase or anti neuronal activity through use of antibiotics over time. And what about adults that had pandas as kids..what happens to their levels (with and w/o IVIG and antibiotics?) There are soooo many questions I have.

 

Hopefully that long term study that is due to wrap up in August following large group of pandas kids for 8 years will have some data to help us. I REALLY hope they publish as soon as the study wraps up...my son isn't getting any younger. I hope it included cunningham test numbers over time.

 

Its all about increasing the odds for our children's future...we can't do that without some statisitics. It KILLS me that the answers to these questions is out there. I wish we could get a survey out to 100 known pandas kids that are now at least 18. I could probably write the survey, but how do you find them?

[kimballot]

Question for you techies out there. Is there any data that suggests that kids can have genetic disposition for pandas, exposure to GAS, and an intact BBB? I was thinking about the cunningham tests and I would htink that there would be kids whose blood would show pandas levels, but they would not have any symptoms, if indeed a "leak" in the BBB is one of the 3 things needed to manifest the condition. Unfortuately the link from Buster's section on the pandasnetwork no longer works to this paper (fyi Buster), so I can't see if athere were any results like this.

 

She would need to test normal human sera with known GAS infection. I know she tests NHS, but I don't think a prior GAS infection is included...and I doubt the sample rate was large enough in original study.

 

Also wondering if she is testing pandas kids treated with antibiotics vs not treated (at least not prophylactically) to see if we can get some data on reducing camKinase or anti neuronal activity through use of antibiotics over time. And what about adults that had pandas as kids..what happens to their levels (with and w/o IVIG and antibiotics?) There are soooo many questions I have.

 

Hopefully that long term study that is due to wrap up in August following large group of pandas kids for 8 years will have some data to help us. I REALLY hope they publish as soon as the study wraps up...my son isn't getting any younger. I hope it included cunningham test numbers over time.

 

Its all about increasing the odds for our children's future...we can't do that without some statisitics. It KILLS me that the answers to these questions is out there. I wish we could get a survey out to 100 known pandas kids that are now at least 18. I could probably write the survey, but how do you find them?

=

I have had some of the same questions. I am hoping someone will chime in with some answers if they are there. Ir seems to me that it would be hard to find a normal human subject who has NEVER had a GAS infection (I don't even think that would be considered normal). But.. what would happen if she tested NHS with a CURRENT GHS infection? Would their serum activate camkinase?

[MomWithOCDSon]

I'm no techie (what's the opposite of "techie"?), but . . . .

 

Interestingly, at the AO conference, Cunningham repeatedly thanked and credited Swedo for various sera samples, so I know that, at least in part, some of the non-PANDAS groups of materials she's acquiring from NIMH. My presumption was that the PANDAS groups she was getting from many of us.

[T_Mom]

MomwithOCDSon--

It has been my understanding that Dr Cunningham got all of her "PANDAS" samples from Swedo's work at NIH-- (correct??) I don't know about the non-PANDAS sera...

My assumption is that any results involving our childrens' samples are no where near being published

 

Norcalmom--

What longitudinal 8 year study of PANDAS kids ? This is the first I have heard of this--and is it even still actively being pursued? I had the impression that the PANDAS work at NIH was dropped some time ago--would love to know if something is expected to come out anytime soon--thanks!

Edited May 31, 2010 by T.Mom

[norcalmom]

Here is the study information. In looking it up, I saw that the date has been changed from August 2010, to May 19th 2010, and is now completed.

 

http://www.clinicaltrials.gov/ct2/show/NCT...NDAS&rank=3

 

It is an 8 year study of OCD patients and how they compare to the subset of OCD - pandas patients, and follows participants for 8 years. I just saw on the AO conference tread that Swed o says she doen't know if they will grow out of it or what the longterm prognosis it...how can that be? She's been working on it for over 20 years!!!