Now research - Tonsils and PANDAS

[airial95]

My son goes in for a T&A next week, and our pediatrician told me to contact Dr. Murphy to see if she needs other labs, cultures, etc...than what they're already ordering. She responded this morning (within an hour of my email), putting me into contact with a Dr. Cleary out of the University of Minnesota who is currently doing research on tonsils of PANDAS kids. He is contacting our ENT to see if he can get a sample of my son's tissue for his research. He's not sure if there will be enough time for the preparations, but he's going to try.

 

I thought I'd put that out there for anyone else who is considering T&A!

[Tamistwins]

Hi both my children will be having a T&A in December can you send me contact information and I will gladly allow a tissue sample for research.

Thank you,

Tami

[saidie10]

great news! hopefully this research will yield some useful information!!!

[pathfinder]

My son is also going for T&A in early Dec.

I do not know if my son could be of any help as he is already 18.

[Kiera]

Airial 95, could you post the contact info for dr Cleary, pm if nec, we're contemplating T&As, thanks!

[kimballot]

My son goes in for a T&A next week, and our pediatrician told me to contact Dr. Murphy to see if she needs other labs, cultures, etc...than what they're already ordering. She responded this morning (within an hour of my email), putting me into contact with a Dr. Cleary out of the University of Minnesota who is currently doing research on tonsils of PANDAS kids. He is contacting our ENT to see if he can get a sample of my son's tissue for his research. He's not sure if there will be enough time for the preparations, but he's going to try.

 

I thought I'd put that out there for anyone else who is considering T&A!

 

Thank you for posting this.. can we get this up on the PANDAS support webpages?? Can we keep "bumping" this so new folks see it. This sounds very important.

[Tamistwins]

This is the response I got from the doctor explaining his background. He emailed me back same day I emailed him.

 

I am an immunologist who has investigated the immune response to StrepA. Recently we have some results from mouse experiments that suggest that that immune response could explain behavioral changes. There is disagreement in the medical community with regard to whether PANDAS is caused by strep infection, can exacerbate existing OCD, or has nothing to do with it. I believe that at least some cases of OCD is initiated and exacerbated by strep infections.  I am a scientist, not a medical doctor and for that reason can not recommend treatment. Moreover,  it appears that removal of tonsils does not always eliminate the problem (not carefully studied yet). In short Pandas is still very poorly understood. I hope to test tonsil tissue from pandas cases for a potentially virulent immune cell induced by strep that could open up the brain to autoimmune antibodies as described by Dr. Cunningham. I would need considerable lead time to arrange for the tissue, if your child ultimately has a tonsillectomy.

[eljomom]

Wow----interesting. I thought Dr. Murphy was AGAINST T& A???? Not saying she recommened yours, ariel95, but wondering what her thoughts are on this?

[airial95]

From my discussions with her, she's not against T&A, she's just not a proponent of it as a PANDAS treatment only. In my son's case, he had 7 or so positive throat cultures in 18 months - almost ALL while on some form of abx. In his case, it makes sense to take them out because combine the chronic potistive cultures with the PANDAS, and it's the right thing to do.

 

I don't think she recommends it in children who don't have the chronic re-infection happening. Our ENT seemed to agree. He said that he wouldn't take them out just because the kids has PANDAS unless there was also another reason (although he admittedly said that they're more quick to take them in PANDAS kids than non-PANDAS kids when there are other factors.)

[eljomom]

Thanks airial---our pandas doc is adamant that they come out, and we have only had strep documented once (well, that we know about.....). My daughter is "chronic" and dr. says she wont' consider ivig before tonsils are out because strep "could be hiding." I have run this by 2 immunologists, and both looked like that was the craziest thing they'd ever heard (the strep hiding deep inside where abx can't reach, as well as swabs). Honestly, if it's hiding so far away from bloodstream that abx can't reach it, then I wonder how it can also be sending out messages to make antibodies, causing symptoms.

[tpotter]

Thanks airial---our pandas doc is adamant that they come out, and we have only had strep documented once (well, that we know about.....). My daughter is "chronic" and dr. says she wont' consider ivig before tonsils are out because strep "could be hiding." I have run this by 2 immunologists, and both looked like that was the craziest thing they'd ever heard (the strep hiding deep inside where abx can't reach, as well as swabs). Honestly, if it's hiding so far away from bloodstream that abx can't reach it, then I wonder how it can also be sending out messages to make antibodies, causing symptoms.

 

 

Dr. Cleary was at the conference in Texas. Very nice man.

Edited November 11, 2011 by tpotter

[airial95]

Thanks airial---our pandas doc is adamant that they come out, and we have only had strep documented once (well, that we know about.....). My daughter is "chronic" and dr. says she wont' consider ivig before tonsils are out because strep "could be hiding." I have run this by 2 immunologists, and both looked like that was the craziest thing they'd ever heard (the strep hiding deep inside where abx can't reach, as well as swabs). Honestly, if it's hiding so far away from bloodstream that abx can't reach it, then I wonder how it can also be sending out messages to make antibodies, causing symptoms.

 

I don't think that's crazy, that's the exact explination I got from both the ENT and our pediatrician. When the tonsils get infected, they get all "crevice-y" (real scientific term there!) and the strep gets buried in those crevices. That's why "normal" kids with multiple strep infections get their tonsils out as well.

 

As to why the immune system knows the bacteria is there even though the abx can't get to it- never asked that question!

[eljomom]

So would that mean that not only would a swab not reach the crevices (we do NOT have multiple strep infections.....). I'm talking about a kid who does NOT swab positive, does NOT have high titers (although even after the 1 strep we did catch, titers didn't elevate). Wouldn't you expect a kid to "have chronic or multiple" strep infections (swab-able) with the strep in the crevices? And wouldn't the strep (even in the crevices) go away for at least a bit after treatment with abx? Sorry for all the questions...just trying to understand. It would be easier to swallow if dd actually swabbed positive and had strep infections. I think that's the part that's getting me. She clearly reacts with NON-STREP things too, so is the doctor just trying to make it all be strep-related?

[lfran]

Tamistwins --

 

Here's this odd thing, but I would like to ask this researcher and/or ask you to forward this questions.

 

DS10 has Lyme and may have PANDAS. All members of our family (including myself) have elevated DNASE and ASO. I also have tonsil crypts (crevices in my tonsils, actually pretty common) which accumulate tonsil stones (also pretty common) that are disgusting and which I have been told are bacteria, etc that accumulate in the crypts and which I cough up every so often (sorry for the TMI!) (They look and smell awful).

 

What I have always wondered is...could strep be hiding in these crypts and would testing these tonsil stones (also called tonsiliths) be useful??? If so, I could easily send him some!!!

 

Would you want to ask him this, or should I? What do you-all think?

 

 

This is the response I got from the doctor explaining his background. He emailed me back same day I emailed him.

 

I am an immunologist who has investigated the immune response to StrepA. Recently we have some results from mouse experiments that suggest that that immune response could explain behavioral changes. There is disagreement in the medical community with regard to whether PANDAS is caused by strep infection, can exacerbate existing OCD, or has nothing to do with it. I believe that at least some cases of OCD is initiated and exacerbated by strep infections.  I am a scientist, not a medical doctor and for that reason can not recommend treatment. Moreover,  it appears that removal of tonsils does not always eliminate the problem (not carefully studied yet). In short Pandas is still very poorly understood. I hope to test tonsil tissue from pandas cases for a potentially virulent immune cell induced by strep that could open up the brain to autoimmune antibodies as described by Dr. Cunningham. I would need considerable lead time to arrange for the tissue, if your child ultimately has a tonsillectomy.

[kim]

Tamistwins, is this the right person?

 

Professor

 

Department of Microbiology

 

http://www.med.umn.edu/microbiology/faculty/cleary/home.html

 

A collaboration with a major pharmaceutical company will soon test a C5a peptidase vaccine in humans for prevention Strep throat. Molecular genetic, immunochemical and sophisticated imaging methods are used in these studies

 

http://www.ncbi.nlm.nih.gov/pubmed/20231435

 

Induction of TGF-beta1 and TGF-beta1-dependent predominant Th17 differentiation by group A streptococcal infection.

Wang B, Dileepan T, Briscoe S, Hyland KA, Kang J, Khoruts A, Cleary PP.

 

not the same team but assuming research along the same lines

 

http://www.ncbi.nlm.nih.gov/pubmed/19940258

Cellular mechanisms of IL-17-induced blood-brain barrier disruption.

Edited November 11, 2011 by kim