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Treating for titers?


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While we don't have this issue, I see it enough to wonder....why are kids being treated for high titers? I know I may get hit with a few tomatoes on this one, but this is ONE part of the NIMH Pandas statement I do find to be relevant...about NOT treating for titers being elevated. First of all, they can be elevated from mild infections that even clear themselves. STrep included. But the fact is that they elevate after being infected, but this does not indicate there is STILL infection. IgM means "recent" infection, but it still could have been weeks ago, and cleared. Those titers will continue to rise even after infection clears, for a few weeks. Then the antiDNase B heads up.

Just curious about this.

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Well, in our case, we're not "treating high titers." We're treating an auto-immune response, and we've found that antibiotics have a positive effect on our DS's behaviors. It was just the presence of high titers that convinced medical professionals to help us by prescribing the antibiotics. For us, they're a tool, but not anything that we rely upon necessisarily.

 

Similarly, we don't stay on the antibiotics because his titers remain high. We stay on the antibiotics because every time we cease them or decrease them significantly for any period of time, DS's OCD behaviors increase notably, and once he's been back on them for a period of time, the behaviors subside again. Frankly, we don't know what's behind that trend. If the abx are immune modulatory. If they're anti-inflammatory. If they're glutamate modulatory. It's a puzzle.

 

I would agree that if all one had to go on was high titers . . . no behaviors, no response to antibiotic or anti-inflammatory therapies . . . then treatment based on the titers alone is probably not warranted. There have been threads here previously, too, about the fact that high titers, as you and the NIMH have noted, are not necessarily indicative of any condition requiring treatment. That some people have perpetually high titers, with no adverse impacts whatsoever. That's why it is the movement/direction of the titers that is deemed more significant than the level of them.

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....why are kids being treated for high titers? ...about NOT treating for titers being elevated.

 

 

both of my kids do show high titers and it has been helpful in diagnosing, so while i certainly understand those who have found trouble due to low titers, in our personal case, they have been helpful. however, we have not "treated" for the high titers. it has been a piece of the diagnostic picture.

 

a behavior therapist suggested pandas for ds6 -- after "developmental ped" suggested SSRI as a FIRST STEP for a 4 1/2 year old exhibiting sudden onset. i do have respect for personal decisions for SSRIs but i still marvel at how this could have been a good suggestion of a first step with sudden onset. after elevated titers, they did a culture, which was positive. after a few missteps, he had initial 100% remission on keflex.

 

ds9, this fall exhibited behaviors that most non-pandas parents would classify as a phase and not really be worried. a few months before, he'd had a slight sinus thing with some green gunk. ASO was normal range, anti dnaseB was high. behaviors intensified a few months later with nighttime peeing and 'bad thoughts' at bedtime.

 

i think while titers are often troublesome, for some, they can be a helpful addition to the diagnostic picture.

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In our family's experience, a big challenge for some PANDAS families is that we don't exhibit normal strep throat symptoms and don't have positive throat cultures. Our entire family's ASO levels were elevated last summer, despite no obvious symptoms. At the time, our local ped actually recommended treating all of us with a month of clindamycin as a precaution. Yeah, might not have been necessary for us as individuals... but if one or more of us were carriers, that would be disastrous for our PANDAS son. And - lo and behold - after the month of clindamycin, all of our ASO titers dropped significantly. Seems to me that this indicates active infection for which the abx were effective; just too coincidental that our titers all dropped after treatment.

 

Our youngest recently spiked a high ASO again, despite no strep symptoms. Our new LLMD (and Dr. K, via e-mail) strongly recommended another round of abx for him. I think it's risk mitigation if nothing else: if he did have strep (and several cases were reported in his daycare) and was an asymptomatic carrier, then the exposure would be bad news for his PANDAS brother. So happens, our PANDAS son has had his most noticeable "rough patch" over the past month, since we found out about the youngest's ASO spike. Coincidence? Maybe... but we (and the docs) didn't want to risk it.

 

I understand that docs in general don't believe it's necessary or wise to treat based solely on elevated ASO. I get that, for the general case. But when there's established PANDAS in the family, I think that "general" standard of care goes out the window, because the risk of exacerbation far outweighs the risk of abx.

 

Something else weighed on our minds as well: our youngest didn't show classic strep symptoms and may in fact be a carrier... but some PANDAS docs suspect that years of "symptomless carriage" of GAS may gradually increase a child's risk of an eventual PANDAS autoimmune response. Did our PANDAS ds have elevated titers in his younger years and we never knew to even check because he didn't show classic symptoms?

 

So some experts suspect that the "strep carrier state" is not as benign as most docs assume. That scares me!

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According to this website http://student.ccbcmd.edu/courses/bio141/lecguide/unit5/humoral/5classes/5classes.html, IgM has a half-life of approx. 5 days and IgG half-life of approx 3 weeks. So a high IgM means pretty recent and possibly current.

 

As others have said, the trend, not the numeric value, of the ASO is important - a level that has climbed over weeks or months suggests that the infection was not cleared. According to Wiki (take it for what it's worth), ASO tests have a 20-30% false negative rate.

 

Also, it is my very rudimentary understanding that immune complexes can bind to either antigen or to antibodies that have already bound to antigen. If it's the latter, then antibodies are bound up in complexes and I think you can get a false negative on a test that is looking for antibodies, because the antibodies aren't loose and detectable. But I can't confirm this impression until we see the doctor next week.

 

Bottom line for the believers of infection-triggered neuropsych behaviors - we just know that having our kids on abx can give them a quality of life that they don't have when they go without.

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