pandas vs. pitand

[smartyjones]

i reallly don't want to jump into the arguments about causes.... just wondering if someone can explain. . . initially, swedo et al discovered pitand, yes? then saw clear patterns with strep and thus pandas, yes? so pandas gained more of a foothold than pitand. but it has always been a subset of pitand. is that correct? why couldn't it be that one has a subset and the larger? perhaps the other infections exist and we only become aware of them when the strep hits and gets out of control.

 

for us -- ds had clear strep markers, aso 898 and + culture, 100% remission on correct abx, although horrible experience on azith initially -- possible herx, we'll never know for sure. then he relapsed after 30 days off abx. saw improvement when back on abx but not as dramatic. about 9 months later, i felt he wasn't healing as he should be and asked our dr about lyme. new integrative MD diagnosed multiple infections.

 

before this, i was sure he was pandas, such clear strep markers. friend kept suggesting checking out lyme - june '09 completely neg western blot -- my attitude was, "thank you very much, my kid has strep issues."

now, i believe he was not inaccurately diagnosed pandas, but incompletely diagnosed not as pitand.

 

at the ocd conference, granted this is through my ears, which are pitand oriented. . . i believe all drs, with the exception of one, are working with and treating "pediatric autoimmune neurological disorder". only one do i believe to be treating "associated with strep". yes, strep may be the most common and/or the easiest to pinpoint. but i personally felt most of the drs had kind of left behind the "AS".

 

due to my personal experience -- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else.

 

going from memory, i believe the NIHM statement calls pandas "the most compelling" -- not the only, not the most common-- but the most compelling -- which i take to mean, the one with the most science backing it.

 

medicine is always changing in what we know -- someone posted here once the history of childbirth and a famous quote from a leading dr at the time that they didn't need to wash hands before examining pregnant women even after autopsies b/c 'drs are gentlemen and gentlemen have clean hands." how utterly ridiculous we see that today!

 

why is there so much controversy here over pandas vs. lyme vs. whatever else? why has it even become pandas rather than pitand?

Edited September 8, 2010 by smartyjones

[Fixit]

i reallly don't want to jump into the arguments about causes.... just wondering if someone can explain. . . initially, swedo et al discovered pitand, yes? then saw clear patterns with strep and thus pandas, yes? so pandas gained more of a foothold than pitand. but it has always been a subset of pitand. is that correct? why couldn't it be that one has a subset and the larger? perhaps the other infections exist and we only become aware of them when the strep hits and gets out of control.

 

for us -- ds had clear strep markers, aso 898 and + culture, 100% remission on correct abx, although horrible experience on azith initially -- possible herx, we'll never know for sure. then he relapsed after 30 days off abx. saw improvement when back on abx but not as dramatic. about 9 months later, i felt he wasn't healing as he should be and asked our dr about lyme. new integrative MD diagnosed multiple infections.

 

before this, i was sure he was pandas, such clear strep markers. friend kept suggesting checking out lyme - june '09 completely neg western blot -- my attitude was, "thank you very much, my kid has strep issues."

now, i believe he was not inaccurately diagnosed pandas, but incompletely diagnosed not as pitand.

 

at the ocd conference, granted this is through my ears, which are pitand oriented. . . i believe all drs, with the exception of one, are working with and treating "pediatric autoimmune neurological disorder". only one do i believe to be treating "associated with strep". yes, strep may be the most common and/or the easiest to pinpoint. but i personally felt most of the drs had kind of left behind the "AS".

 

due to my personal experience -- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else.

 

going from memory, i believe the NIHM statement calls pandas "the most compelling" -- not the only, not the most common-- but the most compelling -- which i take to mean, the one with the most science backing it.

 

medicine is always changing in what we know -- someone posted here once the history of childbirth and a famous quote from a leading dr at the time that they didn't need to wash hands before examining pregnant women even after autopsies b/c 'drs are gentlemen and gentlemen have clean hands." how utterly ridiculous we see that today!

 

why is there so much controversy here over pandas vs. lyme vs. whatever else? why has it even become pandas rather than pitand?

 

i don't know...but I AGREE!!!! or like other post SOT!!! Reality..more than the illnesses listed above or correlation of perfect storm for some, where 2 or mor come together as final trigger???idk

i will add as the wild card...maybe we are amiss in not thinking parasites -other, too

[Kayanne]

"In our Service, patients with a diagnosis of acute psychotic reaction associated with encephalitis (due to bacterial or viral infection, or even vaccine exposure) are treated with ACTH and prednisone. Due to the severity and progression of the illness (see Fig. 3) and the poor results obtained with prior neuroleptic treatments, it was decided to recommend treatment with the same protocol employed for treating postinfectious psychosis."

 

This quote was taken from page 5 of the following paper: http://www.ncbi.nlm.nih.gov/pubmed

 

When I read this paper last year, I was actually stunned because the cases presented happened in the 1960's and 1970's in Sao-Paulo, Brazil.

 

If those doctors got it back then...why are so many of us having a hard time finding treatment here and now? Why is it so hard to understand that different infections can trigger these symptoms?

 

Another thing to consider however, is the trigger of foreign substances (allergies) or our own tissue (cysts) also causing autoimmuniy that affects the brain.

 

I think it would be really helpful to tease all of these out with DIFFERENT labels, not put it all under the label of PITANDS---of course that is a pipe dream that will not happen in my lifetime. That would cause the docs to test for a lot of causes, and tailor treatment based on infection.

 

Just because our children have the same symptoms, doesn't mean our kids all have the same thing. In my mind, it is really post-infectious autoimmunity...for my daughter strep is her trigger.

[PacificMama]

Smartyjones,

 

I agree with everything you have written... well said.

 

(and especially agree with some sort of protocol for testing/considering that there may be many possible infections that lead to these symptoms. I would personally like to see when a newcomer arrives to the board, that they are alerted to this fact right off the bat).

[MomWithOCDSon]

Smarty --

 

I think you're on to something that many of us have come to suspect as observant parents: that our kids are having an inflammatory response to SOMETHING, and that inflammatory response is causing most, if not all, of the behaviors.

 

Unfortunately, though, it's an uphill battle with the medical community at large to leave the door so wide open as to suggest that a multitude of infectious agents may be at the root of the problem, even though the collective experience here would suggest that this is EXACTLY the truth! Despite Swedo's best efforts, PANDAS still solicits eye rolls in my large, metropolitan community, let alone if I were to suggest that they should check for and consider the whole laundry list of possibilities. Especially when they have on hand those ready-made labels with which to stick our kids: OCD, TS, ADHD, ASD, etc.

 

Do we need a protocol that addresses ALL of the PITANDS? Absolutely! But we haven't even yet arrived at one that addresses the PANDAS subset! Hopefully that's coming soon here, and then we'll need to help drive research down the remainder of the list I suppose.

 

It's funny . . . these are just observations. I've been active on this forum since October 2009. When I first peeked in here 11 months ago, I'd venture a guess that 95% of the talk here was of strep/PANDAS. In the months that followed, myco p. got an increasing amount of attention, largely contributing, I think, to the "PITANDS" expansion of the forum name last spring. Now, the other-potential-neuropsychiatric-behaviors-trigger seems to be shifting to lyme, and everyday there seem to be more and more families diving into that particular pool, seeking answers for their kids who have stalled out in terms of response to treatment for either the strep or myco p. components. Which makes sense to me if you're living in one of those tick-prone sectors of the country. But maybe it's a stretch if you're living in an urban area of Chicago or Phoenix and your idea of "outdoor activity" is shopping at an open-air mall?!

 

We all want our kids well, so we all keep searching. And it's great when we're able to tap into physicians who'll take the journey with us, as you seem to have found. My fear, though, is that, if we want to be taken seriously by the medical community at large, we have to maintain some focus and drive research and response to that end.

 

When you look at the history of mental illness, there's a long acceptance of infection leading to psychiatric symptoms and behaviors: syphillus, gonnorhea, UTI's, schizophrenia. So why should it be such a stretch for the standard Western medicine man to consider the possibility that all manner of bacterium could cause such results in modern times?! Answer: it shouldn't be, but it is. Theory as to why: because science has advanced in the ensuing decades, too, so it is now thought that we ought to be able to do better than merely hypothesize about it and wait and see if Grandpa loses his bearings with a UTI, you ought to be able to demonstrate it in the laboratory, replicate those results, record them, track them over time, etc. So what do we get for our advances in science and research? Greater cynicism! Aarrgghh!! Hopefully, Swedo and Cunningham are on their way to setting some of that cynicism aside, at least where strep's concerned.

 

And finally, on the heels of Pandas_Chicago's recent topic post, and in observation of Sammy Maloney's four-year-long healing trajectory, as well as the experience of other folks here in the forum, I have to pose the following question: Whether strep or myco p. or lyme or what-have-you, is a key component to the healing plain old unadulterated TIME?!? Are we essentially rushing from one potential trigger to another, from one line of treatment to another, out of impatience, rather than science?

 

More questions than answers, unfortunately, from where I sit.

[norcalmom]

I agree.

Cunningham found that Lyme infection causes the same rise in Cam K II and anti-neuronal antibodies as strep. Hopefully the white paper and the name change will clarify things.

 

I'm not hung up on the type of infection that caused the condition, because as Cunningham found in her research, Lyme can cause the same autoimmune molecular mimicry reaction that strep can, as can pnemoniae (and who knows what else). In addition, just like strep, Lyme doesn't usually have this type of presentation.

 

Maybe some on the forum just can't take in all the possibilities as once. Or, they are confused that Lymes disease alone causes these symptoms. It doesn’t – any more than strep causes pandas in most children. They both trigger an autoimmune reaction in certain children…and that is what our kids have in common…and maybe it’s the same genetic dysfunction in the kid – i.e. the kids that get it from Lyme are the same kids that would get it from strep, they just happened to get a different infection first? I think there is enough evidence to suggest this is true. So regardless, we need to eliminate ALL infection known to cause the “pandas” reaction. Preferably before doing ivig.

 

I didn't really understand the LYME message until it was too late - but really wish I had done that test before getting ivig. Who wants to go through ivig only to have to do it again? Even tho we have no reason to believe lyme is our trigger I plan to do testing for it at 3 months post ivig if ds is not looking like 100%.

 

 

PS - which doctor is only looking for strep?

[thereishope]

I see it as PANDAS falls under the umbrella of PITAND and is a subset of PITAND. It just gets catagorized as PANDAS do to strep being the original trigger. Perhaps it was coined as PANDAS just to "explain" why strep was the only illness being looked into at the time?

 

So, technically, I (and this is just an opinion) would say all PANDAS kids are PITAND. Maybe it should be PITAND-S for strep PITAND-M for Mycoplasma, PITAND-U for unknown, etc.

[thereishope]

It's just so hard to know when to allow time to take the lead and stop looking for trigger and treatments. If you decide to let time run its course, it can be a good thing or be hurtful esp if more microbes are hiding to hault full recovery.

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

 

 

Are we essentially rushing from one potential trigger to another, from one line of treatment to another, out of impatience, rather than science?

 

More questions than answers, unfortunately, from where I sit.

[trggirl]

I agree.

Cunningham found that Lyme infection causes the same rise in Cam K II and anti-neuronal antibodies as strep. Hopefully the white paper and the name change will clarify things.

 

I'm not hung up on the type of infection that caused the condition, because as Cunningham found in her research, Lyme can cause the same autoimmune molecular mimicry reaction that strep can, as can pnemoniae (and who knows what else). In addition, just like strep, Lyme doesn't usually have this type of presentatation.

 

 

I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction.

[thereishope]

Cunningham never said her test was exclusive to strep. I assume she became intersted in studying PANDAS because of her background with the heart, RF, etc. But never said it was exclusive to strep.

 

 

I agree.

Cunningham found that Lyme infection causes the same rise in Cam K II and anti-neuronal antibodies as strep. Hopefully the white paper and the name change will clarify things.

 

I'm not hung up on the type of infection that caused the condition, because as Cunningham found in her research, Lyme can cause the same autoimmune molecular mimicry reaction that strep can, as can pnemoniae (and who knows what else). In addition, just like strep, Lyme doesn't usually have this type of presentatation.

 

 

I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction.

[MomWithOCDSon]

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

[Fixit]

I agree.

Cunningham found that Lyme infection causes the same rise in Cam K II and anti-neuronal antibodies as strep. Hopefully the white paper and the name change will clarify things.

 

I'm not hung up on the type of infection that caused the condition, because as Cunningham found in her research, Lyme can cause the same autoimmune molecular mimicry reaction that strep can, as can pnemoniae (and who knows what else). In addition, just like strep, Lyme doesn't usually have this type of presentatation.

 

 

I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction.

 

 

i will say again..mho...allergies can raise camK....as per my ds...i don't think he had infection at second draw...height of allergy season....

unless...we just finished 30 days of biaxin for myco p..and 14 days of aug..and a burst 40 dayps prior....

could it be herx from treating myco p creating rise in camK?????

[thereishope]

I also remember during my son's recovery that he would have a setback (enough to really make me nervous) and then a few days later bounce back, not only to where he was prior to the setback but even better. I wonder if anyone else experiened that without IVIG. With IVIG, I suppose it would be referred to as turning back the pages. Yet, my son did not have IVIG

 

 

When I say what helped my son, I do always say antibiotics AND time. It's hard to let time do its thing, but it was part of the equation for him.

 

[

 

Yes, and it is proving out in our case, as well. There have been times when I've been almost completely demoralized because the healing trajectory seems to have stalled out. I've considered other interventions, researched other possibilities, thought about changing abx or even moving on to IVIG.

 

And then, almost like an answer to my dilemma, DS will move ahead again on his own, down the road to recovery, without my having implemented any changes at all. I am, by my very nature, impatient, but PANDAS is a strict task-master, and I'm being forced to learn these days.

Edited September 8, 2010 by Vickie

[trggirl]

I know she never said CamK II was exclusive to Strep, but did she say that it was increased by Lyme and Mycoplasma?

[Kayanne]

Whether strep or myco p. or lyme or what-have-you, is a key component to the healing plain old unadulterated TIME?!?

 

I think so!