Now research - Tonsils and PANDAS

[Ozimum]

umm...Isn't crypt debris in tonsils a biofilm? Doesn't that have implications for the type of antibiotic used to treat?

[kimballot]

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?

 

 

I know it may seem far-fetched, but this was the exact situation my son was in when he was younger. He lived on antibiotics and had massive PANDAS symptoms whenever he came off. He NEVER had a positive throat culture, but did have chronic sinusitis. Eventually, it got to the point where antibiotics could no longer hold him. His tonsils were very large and vascular, but all docs said that was because they were doing their job of filtering his blood of the infection. What they did not realize (and could not see by looking at his tonsils) is that years of allergies and post nasal drip had created cracks (crypts) in his tonsils. These crypts were a perfect breading ground for bacteria - not much blood flow to allow the antibodies and antibiotics to clear them, warm, moist... it was a great place to be. The antibiotics generally kept the infection from flaring into a raging disaster- but could not remove the underlying, smoldering infection. Whenever he switched to lower antibiotics, the infection spread to his sinuses and sometimes his ears.

 

We did not know any of this was happening. When he was 7 he was in MAJOR PANDAS exacerbation, but we were just starting to hear about PANDAS then and had no one to help us. We thought maybe his problems were due to yeast so we took him off ABX and his tonsils turned completely white within a couple of days. We were so happy to finally find the source of the infection that we did not think to culture it - so I do not know for sure if it was strep or some other bacteria.

 

After his tonsillectomy he slowly recovered and had 3 1/2 years of recovery to near neuro-typical behavior, with NO meds. No Antibiotics, no psychotropics... nothing. Just supplements and a good diet... until a bout with mycoplasma and then a year later a sinus cyst- which set off the exacerbation he is now recovering from.

 

We did not do any titers before the tonsillectomy, but we did do them a few months later when he was having a small increase in symptoms one time. ASO was not elevated and DNASE B was slightly elevated- but no more than one would expect in a child who'd had a previous bout with strep. We've checked titers quite often over the last couple of years and they are NEVER elevated... so I don't think titers are a good marker for my son.

 

I do NOT think every child with PANDAS needs to have their tonsils out.. but I do encourage parents who are being told that their children have cryptic tonsils to take it seriously. I also know some kids have done worse after tonsillectomy as the surgery itself can release some bacteria and set off an exacerbation. It is a difficult decision and I respect parents who decide either way, but please don't think it cryptic tonsils are not a possible underlying problem. I suggest anyone having surgery talk with the doc about getting strong antiobiotics before, during, and after surgery try to minimize the risk of the surgery setting off an exacerbation.

Edited November 11, 2011 by kimballot

[Tamistwins]

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.

Hi Ifran,

Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!

[Tamistwins]

Tamistwins, is this the right person?

 

Professor

 

Department of Microbiology

 

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

Yes Kim that is the correct email that Arial gave to me, yes that's the doctor.

 

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.

[lfran]

Thanks! I will do that. (Hope he won't think I'm a kook!)

 

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.

Hi Ifran,

Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!