airial95 Posted May 12, 2011 Report Share Posted May 12, 2011 To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. Link to comment Share on other sites More sharing options...
Kayanne Posted May 12, 2011 Report Share Posted May 12, 2011 To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. I can't remember who or when, but someone posted on the forum that impetigo is one of the strep infections that don't show a titer rise -- I think because of the cholesterol in the skin neutralizes the strep toxins...I'm going by memory, though. Link to comment Share on other sites More sharing options...
JAG10 Posted May 12, 2011 Report Share Posted May 12, 2011 I respectfully disagree about the significance of ASO and anti-DNAse B titers. Just as adamantly as folks are against too much significance being placed on these titers rising, there is another sizable group of kiddos for whom significant elevation of these titers was the only clue of an infectious variable and that pandas/pitand was in play. It is these children that are asymptomatic of strep and no documented history of positive rapids or cultures that run the biggest risk of going misdiagnosed as purely "psychiatric." I mean, c'mon, with behavioral presentation (if anything) what is a pediatrician more likely to run? The convenient, cheap throat culture or anti-DNAse B titers?? The two measurements should go hand-in-hand with behavioral presentation, ones significance no more important/conclusive/diagnostic than the other....at least at this point. Link to comment Share on other sites More sharing options...
airial95 Posted May 12, 2011 Report Share Posted May 12, 2011 I respectfully disagree about the significance of ASO and anti-DNAse B titers. Just as adamantly as folks are against too much significance being placed on these titers rising, there is another sizable group of kiddos for whom significant elevation of these titers was the only clue of an infectious variable and that pandas/pitand was in play. It is these children that are asymptomatic of strep and no documented history of positive rapids or cultures that run the biggest risk of going misdiagnosed as purely "psychiatric." I mean, c'mon, with behavioral presentation (if anything) what is a pediatrician more likely to run? The convenient, cheap throat culture or anti-DNAse B titers?? The two measurements should go hand-in-hand with behavioral presentation, ones significance no more important/conclusive/diagnostic than the other....at least at this point. I apologize if you misunderstood me. I agree that some children their only sign of infection is elevated titres, and without that piece of information lots of folks can be sent down the wrong path. I wasn't trying to minimize their role in treatment/dx. The point I was trying to make is that my son's case is textbook PANDAS, and fortunately we see doctor's who understand that a positive throat culture is enough even in the absence of elevated titres. However, there is a just as sizeable group of children are being denied treatment for PANDAS, even with positive cultures, because of the focus on elevated titres as a defining characteristic. Whenever there is a discussion about the role titres play in PANDAS, wether dx or the actual biology of the condition, it's important to note the sizeable group (I think someone mentioned 30%) who see no change in titres with an active, or asymptomatic infection. My point was that it's only one piece of the puzzle, and I think my last statement should've said: "The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon SOLELY to confirm/deny a diagnosis." Hope that clears up any misunderstanding. Link to comment Share on other sites More sharing options...
thereishope Posted May 12, 2011 Report Share Posted May 12, 2011 (edited) yes, I agree. One can find explanations/studies on this in Buster's Fact Sheet as well http://www.latitudes.org/forums/index.php?showtopic=6265 titers ARE NOT the offending antibodies in pandas Edited May 12, 2011 by Vickie Link to comment Share on other sites More sharing options...
thereishope Posted May 12, 2011 Report Share Posted May 12, 2011 Buster mentioned strep on the skin before. This is a good thread to read. A little bit about ASO Titers http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. I can't remember who or when, but someone posted on the forum that impetigo is one of the strep infections that don't show a titer rise -- I think because of the cholesterol in the skin neutralizes the strep toxins...I'm going by memory, though. Link to comment Share on other sites More sharing options...
thereishope Posted May 12, 2011 Report Share Posted May 12, 2011 Here's another Buster thread that's good adhesion, colonization, invasion and infection http://www.latitudes.org/forums/index.php?showtopic=5520&hl= Just to throw an entirely weird wrinkle on this, the recent Kurlan paper shows that ASO titers drop after long exposure to strep (even if the strep is untreated) -- indicating either the strep is changing in what it produces or that the body gets used to the Streptolycin O (sort of getting used to bee stings) and stops mounting such a defense. This sure raises questions about the effectiveness of ASO as a strep selection tool. Link to comment Share on other sites More sharing options...
JAG10 Posted May 12, 2011 Report Share Posted May 12, 2011 I respectfully disagree about the significance of ASO and anti-DNAse B titers. Just as adamantly as folks are against too much significance being placed on these titers rising, there is another sizable group of kiddos for whom significant elevation of these titers was the only clue of an infectious variable and that pandas/pitand was in play. It is these children that are asymptomatic of strep and no documented history of positive rapids or cultures that run the biggest risk of going misdiagnosed as purely "psychiatric." I mean, c'mon, with behavioral presentation (if anything) what is a pediatrician more likely to run? The convenient, cheap throat culture or anti-DNAse B titers?? The two measurements should go hand-in-hand with behavioral presentation, ones significance no more important/conclusive/diagnostic than the other....at least at this point. I apologize if you misunderstood me. I agree that some children their only sign of infection is elevated titres, and without that piece of information lots of folks can be sent down the wrong path. I wasn't trying to minimize their role in treatment/dx. The point I was trying to make is that my son's case is textbook PANDAS, and fortunately we see doctor's who understand that a positive throat culture is enough even in the absence of elevated titres. However, there is a just as sizeable group of children are being denied treatment for PANDAS, even with positive cultures, because of the focus on elevated titres as a defining characteristic. Whenever there is a discussion about the role titres play in PANDAS, wether dx or the actual biology of the condition, it's important to note the sizeable group (I think someone mentioned 30%) who see no change in titres with an active, or asymptomatic infection. My point was that it's only one piece of the puzzle, and I think my last statement should've said: "The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon SOLELY to confirm/deny a diagnosis." Hope that clears up any misunderstanding. Understood! Clearly, we are all on the same team!!! Your child's different set of variables does not negate the validity of my child's diagnosis nor vice-versa. Hopefully, someday sooner rather than later, science will determine what treatment protocols best suit children that share common diagnostic variables....you would think there would have to be some biological rhyme or reason to it. I suppose Dr. T took a stab at it with his hyper-immune, hypo-immune subtypes....but perhaps we still only have 80 pieces of a 500 piece puzzle. Link to comment Share on other sites More sharing options...
dcmom Posted May 12, 2011 Report Share Posted May 12, 2011 Yes JAG- I hope what I meant to say did not come out wrong- I think high titers are meaningful, and a trend in titers can be meaningful- just that low titers are meaningless. I think we are all on the same page Link to comment Share on other sites More sharing options...
eljomom Posted May 12, 2011 Report Share Posted May 12, 2011 ariel95---did Dr. Murphy's office run some sort of test to determine this? "Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin -" I would be intersted in this too, as 3 months of impetigo (supposed staph) was going on when my daughter tanked last summer. To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. Link to comment Share on other sites More sharing options...
airial95 Posted May 12, 2011 Report Share Posted May 12, 2011 ariel95---did Dr. Murphy's office run some sort of test to determine this? "Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin -" I would be intersted in this too, as 3 months of impetigo (supposed staph) was going on when my daughter tanked last summer. To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. Yes - according to Dr. Troufexis, one of the immune markers they looked at was specific to skin infections - but specifically strep. I don't remember which one it is though...I'll email her and ask. Link to comment Share on other sites More sharing options...
eljomom Posted May 12, 2011 Report Share Posted May 12, 2011 Thank you!! ariel95---did Dr. Murphy's office run some sort of test to determine this? "Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin -" I would be intersted in this too, as 3 months of impetigo (supposed staph) was going on when my daughter tanked last summer. To echo what dcmom said - my son has NEVER had a rise in titres, even with documented positive strep cultures. As a matter of fact, my son's immune panels are maddeningly normal, excellent in some cases. Yet he has a documented history of strep - 4 times last year even while on abx for 11 months of the year (I can't imagine what would've happened if he was NOT on abx the whole time!!!) Not to mention a very clear, documented track record of behaviors associated with exposure - he's very sensitive. All of this without a single blip in any of his blood work - ever. As a matter of fact, Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin - ironically it is an impetigo infection that triggered his PANDAS and he got 2 more bouts recently while on full strength abx. We're going one more round of blood work this week - with an active infection, if it's normal again, they're sending us out to immmunology because something obviously isn't "normal". The bottom line - titres are an interesting piece of the puzzle, but unreliable at best, and shouldn't be relied upon to confirm/deny a diagnosis. Yes - according to Dr. Troufexis, one of the immune markers they looked at was specific to skin infections - but specifically strep. I don't remember which one it is though...I'll email her and ask. Link to comment Share on other sites More sharing options...
eljomom Posted May 23, 2011 Report Share Posted May 23, 2011 arial 95 did you ever hear back about what test showed immune response to skin infection? thanks! Link to comment Share on other sites More sharing options...
airial95 Posted May 23, 2011 Report Share Posted May 23, 2011 Not yet - but I emailed Murphy's office again this morning, and should be talking to them later this week to get our latest blood results...I'll ask again. Link to comment Share on other sites More sharing options...
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