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Moving From PANDAS to CANS?


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Where to begin? I am all for the expanded workup; however, leaving out strep tests (and neglecting to mention that not all kids are able to mount an immune response that shows as elevated titers), as well as Quantitative Immunoglobulins (with subclasses, preferred) seems ... well, irresponsible medicine to me.

 

As for the name they are proposing - CANS - Childhood Acute Neuropsychiatric Symptoms... (symptoms?!) is something I find downright patronizing and offensive. In the medical community, a "sign" is something that is considered objective data and can be observed by others, whereas a "symptom" is subjective and only the patient can attest to it.

 

While some of what they wrote could potentially be construed as an olive branch to NIMH and as much as I would LOVE to see agreement on this issue (namely, Kurlan and Singer getting on board with basing their literature on scientific fact rather than pride, career goals and what they want to "believe"), I don't know that I can jump on board supporting this document.

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Oh good grief, they didn't even put "throat culture for GABHS" on the list of recommended tests.

 

:unsure: I now have a scary image of docs doing lumbar punctures and MRI's on our kids but refusing to do a simple throat culture.

 

No kidding! And again, that kind of runs alongside how quickly some of them reach for their prescription pad and jot down the name of an SSRI on it, rather than, as you've said, try the throat swab or the blood test and, instead, issue a script for an antibiotic. -_-

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As for the name they are proposing - CANS - Childhood Acute Neuropsychiatric Symptoms... (symptoms?!) is something I find downright patronizing and offensive. In the medical community, a "sign" is something that is considered objective data and can be observed by others, whereas a "symptom" is subjective and only the patient can attest to it.

 

Yes! "Symptoms," indeed! I'd missed that initially, as hung up as I was on "Auto-Immune" being exchanged for "Acute."

 

So . . . beating the dead horse as Eileen would say . . . this paper, if taken seriously, will give docs license to treat these "symptoms" (again, seems to me we're talking psych drugs and therapy, here) . . . barring raging medical evidence to the contrary (flaming tonsils, bull's eye rash with the tick still attached)?!?!?!

 

Ay, yi, yi! :wacko:

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Oh good grief, they didn't even put "throat culture for GABHS" on the list of recommended tests.

 

:unsure: I now have a scary image of docs doing lumbar punctures and MRI's on our kids but refusing to do a simple throat culture.

 

Part of the problem with commenting on an article without being able to legally post the entire manuscript is that things get left out. I apologize. It is true that throat culture was not in the table of tests, but that is because the table was meant to supplement the reading - and they do discuss - so here it is....

 

In the beginning when they discuss PANDAS (as in - only triggered by strep) they note that in order for strep to be the only cause of the exacervation.... The reappearance of symptoms should be tem- porally linked to evidence of a recurrent GABHS infection, whereas throat culture and anti-streptococcal antibody titer results are negative during periods of remission.

 

Later on - when talking about the difficulty with diagnosing strep they say....

 

Several publications have emphasized that diagnosing a streptococcal infection is not straightforward.18,19 Without throat culture results, GABHS pharyngitis is difficult to differentiate clinically from pharyngitis caused by other pathogens. Positive throat culture results, however, do not eliminate the possibility of the individual being a streptococcal carrier (harboring GABHS for many months without symptoms of infection or an associated immune response). The use of anti-streptococcal antibody titers (Antistreptolysin O [ASO] and antiDNAse-B) to define an infection is also complex. For example, serial increases in a patient’s antibody titers more accurately define infection than does a single absolute elevated antibody titer; measurement of both ASO and antiDNAse-B are more accurate than either alone; anti- body titers may have a slow rate of decline; group A, C, and G streptococci all produce antigenically identical streptolysin O; GABHS carriers can have protractedly elevated anti- streptococcal antibody titers; and levels of these antibodies are normally higher in school-age children than adults.19,20 As stated by Johnson et al, ‘‘unless studies of any proposed association of GABHS infection. incorporate very frequent and intensive prospective observations during an extended period of time, the likelihood of incorrect interpretation(s) is significant.’’19

 

I do NOT like that they miss the fact that many children have NEGATIVE throat cultures because strep is not sitting on the surface of the throat or tonsils but may be lurking elsewhere... but I guess that is where the titers come in.

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A throat culture (not rapid) is the "gold standard" test for strep. Blood tests are not reliable, if negative, because there are a percentage of ALL people (not just pandas) who do not have a rise in ASO or AntiDnase. I believe this study in pinned at the top with lots of Busters info. Blood testing can give you a clue as to whether there WAS at some point a strep infection, but really cannot tell you when, or if it is still active.

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Okay . . . a few deep, yoga breaths and back for more discussion.

 

Laura, I totally hear what you're saying, and based on some of the subsequent research and information we've been poring over the last few months . . . . glutamate, methylation, biofilms, NMDA receptors, etc. . . . I would have to agree that perhaps "auto-immune" isn't necessarily the best or even necessarily a key component here. It might actually be part of the "chicken and egg" cycle, with one situation (over- or under-methylation?) kicking the other (auto-immune response) into gear, or vice-versa. But for that matter, it seems likely to me, also, that "pediatric" is part of the current misnomer, too. So perhaps we shouldn't get caught up in the labels, necessarily?

 

The problem it seems to me, though, is that our local, uninitiated medical care professionals do tend to rely upon these journal articles and labels, so it's hard to avoid the possible ramifications of those labels and/or changes in them. Those of us "in the trenches" here, including parents, professionals and the kids, know there're nuances and mitigating factors and very individualized responses to each and every trigger, each and every intervention, so few of us (Eileen's DDs a noted exception ;) ) fit in the box especially neatly. We've come to accept and acknowledge that, and the lucky few of us who've found medical practitioners who also operate with a freer intellectualism and curiosity have learned to "go with the flow" as the research evolves and our own children respond well to this, respond poorly to that, etc.

 

My sense of cynicism, of frustration, of rebellion, if you will, toward this latest Kurlan/Singer treastise is more about how this will be received by the lesser-informed or the less sophisticated. It will not make our paths, or the paths of those families after us, any smoother, I don't think. And with the changes in the label itself, it just feels like it's offering a haven for, again, treating the symptoms but not going deeper, after the root cause. Or, even perhaps worse than that, pretty much dispensing with a concern over a root cause by taking the "auto-immune" out of it, without exchanging that for something else equally/distinctly medical rather than behavioral or symptomatic. :(

 

Does that make sense? :blink:

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Wouldn't a rapid strep test not necessarily be accurate if a child is a strep carrier? I thought they did reccomend the blood test which is the most telling?

 

It is actually not studied as to whether strep carriers have elevated ASO's (or other strep titers) or not. As far as I know, a strep carrier can definitely be positive on a rapid (or culture).

 

From my personal experience:

 

dd11 (has PANDAS)--has always had low strep titers even in the face of positive cultures (even when she had been positive/untreated for 2mo, so the titers should have had time to rise)and PANDAS (OCD, anorexia, bipolar beh, tics) severe enough to require hosp. Ed Kaplan (WHO strep expert) has said he would call her a strep carrier.

 

dd8 (doesn't have PANDAS knock on wood)--has been tested positive on both rapid and 48 cultures without any strep symptoms (pharyngitis, fever, etc). She would be called an assymptomatic "carrier" b/c she cultures positive and fails to clear her strep on her own. We've never done ASO or anti-dnase b on her.

 

However....

If a child is "carrying" strep in a non-throat location (eg gut/sinuses etc) then I wouldn't expect them to be positive on a rapd (or other throat culture).

Edited by EAMom
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The problem is that the chart is titled "CANS suggested etiologic evaluation"...so these are the suggested tests for a child that presents with Childhood Acute Neuropsychiatric Symptoms. A doc will look at the chart, and run tests based on it. If a mom doesn't already know about PANDAS, but is simply bringing in a child to be seen for sudden onset behavior changes why would they have already done a throat culture? I also don't think we can ever assume a throat culture has already been done, just based on how many kids come to this forum with suspected PANDAS and no throat culture.

 

In fact, the first several docs to suspect that my dd had PANDAS ordered strep titers. NOBODY even thought to order a throat culture (let alone throat culture her sister) because her throat didn't look red. Dh and I had to insist on the throat culture (all the while the ped said "her throat looks fine").

 

Also, a lot of the discussion from Kurlan is based on "a throat culture doesn't really tell you much because that kid just might be a carrier" (note: he is assuming strep carriers don't get PANDAS). In that he is discrediting (or even discouraging) docs from running throat cultures.

 

 

Oh good grief, they didn't even put "throat culture for GABHS" on the list of recommended tests.

 

:unsure: I now have a scary image of docs doing lumbar punctures and MRI's on our kids but refusing to do a simple throat culture.

 

Part of the problem with commenting on an article without being able to legally post the entire manuscript is that things get left out. I apologize. It is true that throat culture was not in the table of tests, but that is because the table was meant to supplement the reading - and they do discuss - so here it is....

 

In the beginning when they discuss PANDAS (as in - only triggered by strep) they note that in order for strep to be the only cause of the exacervation.... The reappearance of symptoms should be tem- porally linked to evidence of a recurrent GABHS infection, whereas throat culture and anti-streptococcal antibody titer results are negative during periods of remission.

 

Later on - when talking about the difficulty with diagnosing strep they say....

 

Several publications have emphasized that diagnosing a streptococcal infection is not straightforward.18,19 Without throat culture results, GABHS pharyngitis is difficult to differentiate clinically from pharyngitis caused by other pathogens. Positive throat culture results, however, do not eliminate the possibility of the individual being a streptococcal carrier (harboring GABHS for many months without symptoms of infection or an associated immune response). The use of anti-streptococcal antibody titers (Antistreptolysin O [ASO] and antiDNAse-B) to define an infection is also complex. For example, serial increases in a patients antibody titers more accurately define infection than does a single absolute elevated antibody titer; measurement of both ASO and antiDNAse-B are more accurate than either alone; anti- body titers may have a slow rate of decline; group A, C, and G streptococci all produce antigenically identical streptolysin O; GABHS carriers can have protractedly elevated anti- streptococcal antibody titers; and levels of these antibodies are normally higher in school-age children than adults.19,20 As stated by Johnson et al, unless studies of any proposed association of GABHS infection. incorporate very frequent and intensive prospective observations during an extended period of time, the likelihood of incorrect interpretation(s) is significant.19

 

I do NOT like that they miss the fact that many children have NEGATIVE throat cultures because strep is not sitting on the surface of the throat or tonsils but may be lurking elsewhere... but I guess that is where the titers come in.

Edited by EAMom
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Maybe this group needs a new name - and maybe that's PANS - and PANDAS should be discussed as a sub-set with a distinct protocol, so not every parent feels they have to turn over every rock.

 

 

 

I think this might be key here, LLM. Perhaps our kids (yours, mine, others) are dealing with different subsets of a similar disorder. I have seen this evidenced in my own family! I see it in my friends' children (via PANDAS email connections) very often.

I think there is an autoimmune component or PERHAPS- the PANDAS symptoms are a component of a larger autoimmune system disorder. There are several kids on here (one of mine included) with very suspicious lupus-like labs. so again- a chicken and the egg argument. maybe we should not even lump them in with PANDAS, though I am eternally grateful for the PANDAS treatment that has restored some functioning.

Also, you will notice (or maybe no one reads my posts :P ) but I often refer to PANDAS as "whatever 'IT' is". To me this thing is an "IT"-- there are things yet to be discovered. I just really wish the PANDAS doctor's paper would have come out first.

 

sigh

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I've been hesitent to comment on this at all since I do not have access to the whole article, but reading your comment, makes me realize this is an attempt to throw the phenomenon (and the kids) into the hands of psychiatrists first since it would be based on treating symptoms first. This would just elongate the time between onset and real treatment. I know a few on here have had good psychiatrists suggest PANDAS, but it has been the minority.

[

 

 

disclaimer that i have not read the read full article. . . and am horribly jaded against JHMU. . .

 

just have to think, "fool me once, shame on you; fool me twice, shame on me" -- no trust from me whatsoever these authors will have anything helpful for us and will do anything helpful to advance the cause and proper treatment for 'IT'. just think the old establishment folks don't change their spots that quickly (2-3-4 years is what i mean by quickly). i think they are much too embedded in their own past and prides to be helpful. i think we need our current champions and a new crop -- not these unlikelies even if in an attempt to save face b/c the evidence is too compelling.

 

can't sell me on the "appropriate treatment" being something other than what they have purported in the past.

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