PANDAS are Strep Detectors?

[ibcdbwc]

Does anyone have any theories as to WHAT the MECHANISM OF ACTION would be when a PANDAS child reacts to another person with strep? I'm assuming- as I've read on this board-- that a PANDAS child can react even if they don't have documentable strep of their own (i.e culture negative and titers WNL) (but perhaps a history of strep). (still haven't had our phone consultation yet so I still have so many questions).

[MomWithOCDSon]

I don't have a "scientific" answer, but basically, while on abx, my DS will still, when exposed to strep by a classmate or a family member, "respond" by mounting increased antibodies; we've documented that phenomenon through ASO and AntiDnase-B testing. The abx effectively prevent him from getting an "active" infection as a result of the exposure, but because he's essentially "allergic" to strep, even exposure drives the antibody response.

[ibcdbwc]

Thanks Nancy--- that makes sense. The titer rise explains that the antibodies react such that they attack the basal ganglia. My ds titers were normal (48) but reacted when his brother had strep. So maybe it was coincidence? I'm not ruling out PANDAS since ds still clearly has exacerbations. But maybe his brother's strep was not the trigger???

[thereishope]

Some compare the PANDAS reaction to a peanut allergy. Some kids have such severe peanut allergies that they will react to peanut particles just being air borne.

Edited May 11, 2011 by Vickie

[ibcdbwc]

Yes, it makes sense-- the allergy-- the reaction. I guess I am not fully understanding the mechanism of injury to the basal ganglia. If it's the antibodies that attack the basal ganglia -- then a very elementary view would assume that you would always see a correlating rise in titers-- as in Nancy's case above. The rise in antibodies triggered the OCD response. The titers would indicate that the body is reacting to someone else's strep--as if it were in their own body. In a weird way- that actually makes sense.

 

Its' the other view that is my problem. Is it still strep induced PANDAS if you see NO positive culture AND NO rise in antibodies? Certainly there might be no rise-- if it's not strep induced-- it's something else like mycoplasma or whatever. But on a personal note-- since Dr. K thought the correlation with my DS's brother's strep-- was indicitive-- then my question remains--- If it's the allergic reaction to strep--why did we NOTt see a titer rise. But yet we still saw a dramatic excacerbation.

 

So in the case of peanuts-- you don't see a rise in antibodies of course. You do see a difference in their IG panel-- histamine response et cetera. Maybe it's possible that the antibodies are not the true offenders after all. (they could just be a side note in some PANDAS kids). Maybe it's the TOTAL immune response--- in totality-- that attacks the basal ganglia.

 

I am going in circles!!! Has anyone studied the effect of PANDAS children-- on the MOTHER!!! (premature aging...)

[Iowadawn]

Keep in mind, especially for the newer ones on the forum, it is not the antibodies against strep that is involved in the autoimmune reaction to the basal ganglia. Dawn Search the forum, or the PANDAs websites for good explanations.

[ibcdbwc]

I'm so sorry-- I thought the hypothesis in classic PANDAS (strep induced)-- was that it WAS the antibodies (formed in response to strep) that attachked the basal gaglia. See below from NIMH.

Am I missing something--- be patient with me :-)

 

 

"What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.

 

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea."

[ibcdbwc]

well at the very least-- the antibodies are the ones that set off the immune response that damages the tissue. Either way-- you would see that the antibodies were there-- doing something.

[KaraM]

I think, but am not sure, that it is a yet to be identified "rogue" antibody, and not and ASO or AntiDNase antibody. So, while some may get a rise in ASO or AntiDNase B titers with an infection, it is not those specific antibodies that are attacking the brain.. So the way I interpret it (which may or may not be correct) is that the rogue antibody (which may also be triggered by strep) is what is attacking the brain. So you may or may not see the ASO and/or Anti DNase B. (Someone please correct me if I'm misunderstanding...I'm not even sure if titers and antibodies are the same thing or just related in some way... )

 

well at the very least-- the antibodies are the ones that set off the immune response that damages the tissue. Either way-- you would see that the antibodies were there-- doing something.

Edited May 11, 2011 by KaraM

[thereishope]

A side note in regards to a rise in titers, some kids even with a strep infection will not have a rise in titers. They are not always reliable.

 

Also, sometimes it is not strep induced and some parents have cited a worsening of symptoms when their child is around another sick person (strep or other illness). Also, with some PANDAS kids, other non-strep triggers within themself (allergies, viruses, other infections) will trigger a response. Yes, you cannot assume that just because a child ramps up it is always strep related. Well, with some kids their strep triggered exacerbations are pretty tell tale that it's strep as they may vary from non-strep triggers and the parent "knows" it's strep even before a test is ever performed. For many,strep is the original trigger and then the pandora's box opens and they begin to react to other things as well.

 

Yes, you drive yourself batty with this.

Edited May 11, 2011 by Vickie

[KaraM]

Even though it can be something other than strep, to you think it could be the same "rogue" antibody?

 

A side note in regards to a rise in titers, some kids even with a strep infection will not have a rise in titers. They are not always reliable.

 

Also, sometimes it is not strep induced and some parents have cited a worsening of symptoms when their child is around another sick person (strep or other illness). Also, with some PANDAS kids, other non-strep triggers within themself (allergies, viruses, other infections) will trigger a response. Yes, you cannot assume that just because a child ramps up it is always strep related. Well, with some kids their strep triggered exacerbations are pretty tell tale that it's strep as they may vary from non-strep triggers and the parent "knows" it's strep even before a test is ever performed. For many,strep is the original trigger and then the pandora's box opens and they begin to react to other things as well.

 

Yes, you drive yourself batty with this.

Edited May 11, 2011 by KaraM

[ibcdbwc]

Thanks so much to ALL of you for helping me with this. I suppose its more that antibodies trigger other antibodies which ramp up and cause an inflammatory response in the brain.

 

Elementary version: strep is identified by the persons immune system. The immune system ramps up its antibodies in response. Two such antibodies produced are ASO and antiDNase-B-- they are just mere players-- markers. The antibodies that are produced ramp up the rest of the the immune system. The system mistakenly causes inflammatory response in the basal ganglia.... OCD exacerbates.

 

We see a rise in ASO titers (not the level-- but the rise) correlate with some PANDAS cases. The rise indicates that strep did indeed trigger the above reaction-- the entire immune response- causing the inflammation et cetera.

 

Conversely then, shouldn't a non-rise indicate that antibodies were not formed in response to the strep? And wouldn't that mean that the trigger was not released? Meaning that the chain of events to cause more antibodies and more inflammation was never was set off.

 

YES!!! If the irritant is something else-- like a virus or allergies or whatever---different antibodies will trigger a similar immune response causing the same inflammation causing the same symptoms. So that makes perfect sense-- ASO would not rise at all. I get that.

 

But in the case of PANDAS Strep Detectors-- you would still think that you would see an ASO rise as part of the trigger of antibodies that sets the whole entire system in motion. Like Nancy does in the second post of this thread.

I'll let the issue be-- I am sure i am missing A LOT and I apologize to the veterans of the group. Am just trying to make some teeny bit of sense out of this mess!

[dcmom]

Hopefully someone else will chime in-

 

titers ARE NOT the offending antibodies in pandas

 

titers (ASO and AntiDnase) are something like the reaction to the toxins released by strep. 30% of all kids do not get a rise in titers after strep. My daughter had a positive strep culture and never raised titers. Negative titers are relatively meaningless, positive titers can be significant, and the trend of the titers is probably most meaningful.

 

The antibodies that attack the brain, or cause the molecular mimicry, can only be tested through Dr Cunningham's research study.

 

I am sure someone else can give a better technical description, but this is the jist of it!

[JAG10]

My girls get a rise in titers and never rapid or culture positive, ever. Even though ASO/aDNAse b titers do not measure the anti-neuronal antibodies causing the problem, there is a subset of kids here whose anti-DNAse B titers seem to correlate to their symptom severity; when they are up, symptoms are up; when they are way, way up, symptoms are also off the charts (even though some will say it is only the direction of the titer, not the height....that doesn't seem to always be the case.)

 

I wish I knew definitively that nothing other than some strain of strep makes ASO & anti-DNAse B titers rise. I mean, has any scientist looked at that??? Sometimes, I feel like we are all operating under certain established scientific "facts" that we assume to be true, but don't our kids tend to break so many scientific "rules", maybe some of these facts are not so for our kids, but nobody has looked at it??

[Kayanne]

The way I understand it is, the difference can be colonization vs. infection.

 

I don't fully understand the actual concepts, but I will try -- colonization is when bacteria finds it's way into/onto a host (think of them as explorers starting new colonies). It is the beginning stages of an infection, and it is still precarious for the bacteria because the bacteria has to set up a settlement on hostile terrain--not only will they be up against the human immune system, they will also be competing with and making alliances with other bacteria and viruses and other pathogens/parasites. If the host has an immune memory of a strep infection, the body will responded quickly by mounting a response. With the aid of antibiotics, which slow bacteria growth so the immune system can take it out, that immune response will be quick and swift, resulting in a failure of the strep to create a permanent settlement -- which I would consider an active infection.

 

ASO and DNase titers are only relevant because they are markers for a toxin produced by a previous strep infection. A whole army of different types of soldiers are released when your body mounts an immune response. What is not known is which type(s) of soldier(s) goes "bad" and starts attacking itself (think of it as friendly fire).

 

So the question is, will you even get an ASO or DNase titer rise, if not enough bacteria has been allowed to live for a significant amount of time, thus creating "garbage and waste" or in other words, "strep toxins"? So, I think there is a very good chance that titers will not rise with just strep exposure.

 

This is just how I look at it -- very simply, I don't have a medical background so I do struggle with this -- please anyone chime in to correct me.

 

The whole idea of a ramping up of symptoms based only on exposure is really big....I could rant for hours on this.

Edited May 12, 2011 by Kayanne