Strep Carriers and Low Titers

[MIAS_MOM]

I just read an article from P.A.N.D.A.S.Network that said, "If the child is a "carrier", their strep titers will not raise at all." My dd's few titers we have done were all low, she has + strep throat just about every other month. If this is indeed true, then what do we test to see if she is a "carrier?"

[peglem]

I just read an article from P.A.N.D.A.S.Network that said, "If the child is a "carrier", their strep titers will not raise at all." My dd's few titers we have done were all low, she has + strep throat just about every other month. If this is indeed true, then what do we test to see if she is a "carrier?"

I don't think there is a test. But, it is unknown if strep carriage is really "benign" in our kids like so many docs will tell you. If you suspect carriage, try clindamycin to clear. My daughter repeatedly tests positive on the rapid, but cultures are neg. and seldom have a titer rise or elevated titers. Things that can cause false pos. rapid: colonization with staph, non-gabhs strep (that shares the antigen that the rapid tests detects), dead gabhs that have not been removed by the body.

 

When your daughter has + strep tests, does she have typical symptoms of strep throat, or just behavioral/neurological symptoms? Mine just gets the behav/neuro symptoms- but abx improves those, so I figure it doesn't matter if she's a "carrier" or not- the strep is causing a problem for her.

[MIAS_MOM]

I just read an article from P.A.N.D.A.S.Network that said, "If the child is a "carrier", their strep titers will not raise at all." My dd's few titers we have done were all low, she has + strep throat just about every other month. If this is indeed true, then what do we test to see if she is a "carrier?"

I don't think there is a test. But, it is unknown if strep carriage is really "benign" in our kids like so many docs will tell you. If you suspect carriage, try clindamycin to clear. My daughter repeatedly tests positive on the rapid, but cultures are neg. and seldom have a titer rise or elevated titers. Things that can cause false pos. rapid: colonization with staph, non-gabhs strep (that shares the antigen that the rapid tests detects), dead gabhs that have not been removed by the body.

 

When your daughter has + strep tests, does she have typical symptoms of strep throat, or just behavioral/neurological symptoms? Mine just gets the behav/neuro symptoms- but abx improves those, so I figure it doesn't matter if she's a "carrier" or not- the strep is causing a problem for her.

She gets behavioral/neuro changes and usually complains of her throat hurting, the reason for thinking this over is her present Dr. (who is not a PANDAS Dr.) keeps telling me "we gotta catch those elevated titers on paper!" I've tried to reason with her that maybe not all PANDAS has elevated titers, but she basically looked right through me and repeated, " We gotta get them on paper!" She's referring us on to a PANDAS dr and wants them before we go for our appt. I dont see it happening, and I'm sure not gonna subject my dd to any more blood draws than we have to. It doesn't really matter on dd's part, since we are going to a real Dr soon, but more me just exploring the big bad world of PANDAS. BTW, We also have positive rapids, with neg cultures. Thankyou peglem !

[peglem]

I just read an article from P.A.N.D.A.S.Network that said, "If the child is a "carrier", their strep titers will not raise at all." My dd's few titers we have done were all low, she has + strep throat just about every other month. If this is indeed true, then what do we test to see if she is a "carrier?"

I don't think there is a test. But, it is unknown if strep carriage is really "benign" in our kids like so many docs will tell you. If you suspect carriage, try clindamycin to clear. My daughter repeatedly tests positive on the rapid, but cultures are neg. and seldom have a titer rise or elevated titers. Things that can cause false pos. rapid: colonization with staph, non-gabhs strep (that shares the antigen that the rapid tests detects), dead gabhs that have not been removed by the body.

 

When your daughter has + strep tests, does she have typical symptoms of strep throat, or just behavioral/neurological symptoms? Mine just gets the behav/neuro symptoms- but abx improves those, so I figure it doesn't matter if she's a "carrier" or not- the strep is causing a problem for her.

She gets behavioral/neuro changes and usually complains of her throat hurting, the reason for thinking this over is her present Dr. (who is not a PANDAS Dr.) keeps telling me "we gotta catch those elevated titers on paper!" I've tried to reason with her that maybe not all PANDAS has elevated titers, but she basically looked right through me and repeated, " We gotta get them on paper!" She's referring us on to a PANDAS dr and wants them before we go for our appt. I dont see it happening, and I'm sure not gonna subject my dd to any more blood draws than we have to. It doesn't really matter on dd's part, since we are going to a real Dr soon, but more me just exploring the big bad world of PANDAS. BTW, We also have positive rapids, with neg cultures. Thankyou peglem !

A "real" PANDAS doctor will not discount a PANDAS dx based on titers. Its frustrating to be stuck in the "carrier" limbo zone.

[MomWithOCDSon]

Our PANDAS DS14 is a carrier, but his titers (both ASO and AntiDnase- are perpetually elevated. He never "gets strep" in the classic sense: no sore throat, no fever, nothing but behavioral changes. But DH or I will "catch" it from him within 7 to 10 days of his exposure.

 

What is the source of the PANDAS Network position on this issue? While the absence of high titers shouldn't cause a clinician to dismiss PANDAS as a viable diagnosis, I wouldn't think existence of high titers would necessarily exempt a person from being a carrier, either. This seems odd.

[peglem]

Our PANDAS DS14 is a carrier, but his titers (both ASO and AntiDnase- are perpetually elevated. He never "gets strep" in the classic sense: no sore throat, no fever, nothing but behavioral changes. But DH or I will "catch" it from him within 7 to 10 days of his exposure.

 

What is the source of the PANDAS Network position on this issue? While the absence of high titers shouldn't cause a clinician to dismiss PANDAS as a viable diagnosis, I wouldn't think existence of high titers would necessarily exempt a person from being a carrier, either. This seems odd.

I know! But the lack of typical symptoms and lack of titers indicates to most physicians we've seen that there is no immune response to the strep- which (I guess) is what they consider a strep carrier to be: someone who has strep as a normal part of their flora w/ other flora keeping it in check so there is no immune reaction and hence no problem?

See, I think they should be asking WHY there is no immune response to the strep instead of assuming its just okay.

Edited May 2, 2011 by peglem

[MIAS_MOM]

Our PANDAS DS14 is a carrier, but his titers (both ASO and AntiDnase- are perpetually elevated. He never "gets strep" in the classic sense: no sore throat, no fever, nothing but behavioral changes. But DH or I will "catch" it from him within 7 to 10 days of his exposure.

 

What is the source of the PANDAS Network position on this issue? While the absence of high titers shouldn't cause a clinician to dismiss PANDAS as a viable diagnosis, I wouldn't think existence of high titers would necessarily exempt a person from being a carrier, either. This seems odd.

I found this article "Diagnostic Test" by Diana Pohlman, June 7,10. On pandasnetwork.org

3rd paragraph into the strep titers test.

[Worried_Dad]

Agreed! I've seen this assertion about carriers not reacting to GAS with rise in titers, and it always confuses me. How do they identify a carrier if there is no sign of GAS infection? Do these carriers show positive throat cultures, just no titers?

 

This hasn't been our family's experience, anyway. We've all shown elevated titers without "classic" GAS symptoms. Our youngest in particular keeps spiking high ASO with no symptoms; local docs have been hesitant to treat him with abx and have implied to us that he's probably a carrier and that the infection is "benign." So many different opinions on this from the medical community: I get the feeling they really don't know what a "strep carrier state" is yet or what implications it may have for the carrier long-term.

 

I do know this: when our youngest spikes high ASO, our PANDAS ds reacts. And abx (month of clindamycin) brings our youngest's ASO back down, so it certainly appears that he's harboring active infection despite no obvious symptoms.

 

FYI, found this article (below) from 1989. If I read the abstract right, it seems to say that carriers do often show high ASO titers, just no classic symptoms? I'm confused!!!

 

http://www.ncbi.nlm.nih.gov/pubmed/2600456

 

 

Our PANDAS DS14 is a carrier, but his titers (both ASO and AntiDnase- are perpetually elevated. He never "gets strep" in the classic sense: no sore throat, no fever, nothing but behavioral changes. But DH or I will "catch" it from him within 7 to 10 days of his exposure.

 

What is the source of the PANDAS Network position on this issue? While the absence of high titers shouldn't cause a clinician to dismiss PANDAS as a viable diagnosis, I wouldn't think existence of high titers would necessarily exempt a person from being a carrier, either. This seems odd.

Edited May 2, 2011 by Worried Dad

[AmySLP]

I wrote an e-mail to Swedo with the question of strep carriage and PANDAS back in MArch 2009. Anyhow, in that response she said that if a child tests negative after ABX for a postitive strep, then they are not considered a carrier. My daughter had chronic step for 6-7 months, with month after month of postives, and no rise in titers. She had no classic symptoms, just behavioral changes, onset of tics and scarletina rash. At the time I was told by an infectious disease doc that my daughter could not have PANDAS b/c of the lack of titer rise and that she was clearly a carrier (of course there was no talk of clearing that carriage state). Out of frustration I wrote to Swedo, feeling frustrated if I was heading down the right path-PANDAS or not possibly PANDAS. She responded that same day and I keep that e-mail in my binder for docs we see.

 

Here was my original e-mail to her---

 

Dr. Swedo,

Dr. Perlmutter suggested I e-mail this question to you. Can a child be a strep "carrier" (no full blown symptoms) and have PANDAS?

 

My daughter is 4 1/2. She has had 5-6 positive strep cultures in the 7 months prior. (She had at least 4-5 positive strep result in first 2 years of life, with the first at 7 weeks of age and the next at 12 weeks). She also had a positive result on an Epstein Barr panel in January. She meets the behavioral criteria for PANDAS, but had essentially non-existent titers when drawn last month. She has responded well to Amoxicillian. We saw an immunologist who said it absolutely couldn't be PANDAS b/c she was only a carrier. She told us to stop the antiobiotics we were using prophylactically.

 

Basically all I want to know is, Can you simply be a "carrier" and still meet your diagnostic criteria for PANDAS? This will help me know if I need to pursue appts. with PANDAS specialists or if I need to look elsewhere for answers.

 

Thank you so much for your time,

Sincerely,

Amy Hitchcock

 

Her response to me (edited somewhat, as I do not have response saved on my computer):

Strickly speaking, a strep carrrier is someone who doesn't clear strep in response to ABX and in most cases, does't have a titer rise ( indicating that the step hasn't actually "infected" the child b/c it hasn't acticated the immune system.) If your daughter clears the strep each time she receives a course of ABX, then she's not a carrier, but just one of the 5% of children unusually susceptible to strep (this made perfect sense to me as my daughter had strep as a baby at 7 weeks, 3 months, 6 months and so on). At 4.5 she may also be getting reinfected due to poor hygeniene practice (fingers in mouth etc). We have seen many children who met al criteria for PANDAS without having a rise in ASO titers and antistrep DNASE titers. WHen we check ACHO and some other strep titers, they are usually posiitive on at least one, but those are done for research only.

 

The immunologist is right to be concerned about unnecessary use of phophylaxis, so it might be useful to stop it and chech throat culture in 3 days. If it's negative, just watch her and going forward and if symptoms return, culture her again, if positive treat and then start prophylaxis. If her throat culture is postitve for strep , then her pediatrician should treat following the AAP "red book" guidelines for clearance of group A beta-strepoccacal infections. She should have 2 negative strep cultures at least 2 days apart before clearing her free of strep. At that point it should do no harm following the course of treatment I sketched above, obtain cultures, if OCD returns and treat if possitive.

 

Good Luck!

 

She ended up being positive for strep on that culture 3 days later-treated with Clindamycin and she was free of strep for nearly a year, without prohylaxis. Until one day last MAy when it all came back with a vengence. She is now on daily prophylaxis, which we are always playing with the dosage and med itself-don't have her 100% yet.

Here we are, just over 2 years later, still battling PANDAS. My daughter is on the milder side of this, with mainly movement issues (tics and chorea) and mild OCD and emotional lability. If any doc ever suggests my daughter is a carrier or questions use of prophylaxis, I flip to this page in my binder to show them Dr. Swedo's tx. recommendations. After all she coined the dx PANDAS.

Edited May 2, 2011 by AmySLP

[dcmom]

Unfortunately, I think there is just not enough known about pandas and also the carrier state. A carrier state is usually thought of someone that is colonized with strep, and not infected. Docs tend to think of this as a benign state- but this is certainly NOT the case for a child symptomatic with pandas.

 

Clindamycin is the recommended antibiotic for carriers. It is interesting that Amy had such great luck with it. Both of my pandas girls just had strep (we haven't had any chronic strep issues, but we have had major pandas issues initially triggered by strep). We immediately treated them with 14 days of clindamycin, which cleared the strep (fever, fatigue, sore throat subsided, negative culture), and thankfully have only seen a very minor bump in pandas symptoms. I am crediting the clindamycin.

 

In doing some research, I did find a study that showed, that clindamycin was much better at preventing an autoimmune reaction (in the petrie dish) than other antibiotics after a Group B Strep. I know it is a different type of strep- but it is possible it could have that effect on our kids as well- I have no other explanation as to why they fared ok with this strep. I plan to treat immediately with clinda if/when they get strep again.

[MIAS_MOM]

WOW AmySLP! This too will be added to our folder of records we take to our appt's. Thanks so much!

[peglem]

I wrote an e-mail to Swedo with the question of strep carriage and PANDAS back in MArch 2009. Anyhow, in that response she said that if a child tests negative after ABX for a postitive strep, then they are not considered a carrier. My daughter had chronic step for 6-7 months, with month after month of postives, and no rise in titers. She had no classic symptoms, just behavioral changes, onset of tics and scarletina rash. At the time I was told by an infectious disease doc that my daughter could not have PANDAS b/c of the lack of titer rise and that she was clearly a carrier (of course there was no talk of clearing that carriage state). Out of frustration I wrote to Swedo, feeling frustrated if I was heading down the right path-PANDAS or not possibly PANDAS. She responded that same day and I keep that e-mail in my binder for docs we see.

 

Here was my original e-mail to her---

 

Dr. Swedo,

Dr. Perlmutter suggested I e-mail this question to you. Can a child be a strep "carrier" (no full blown symptoms) and have PANDAS?

 

My daughter is 4 1/2. She has had 5-6 positive strep cultures in the 7 months prior. (She had at least 4-5 positive strep result in first 2 years of life, with the first at 7 weeks of age and the next at 12 weeks). She also had a positive result on an Epstein Barr panel in January. She meets the behavioral criteria for PANDAS, but had essentially non-existent titers when drawn last month. She has responded well to Amoxicillian. We saw an immunologist who said it absolutely couldn't be PANDAS b/c she was only a carrier. She told us to stop the antiobiotics we were using prophylactically.

 

Basically all I want to know is, Can you simply be a "carrier" and still meet your diagnostic criteria for PANDAS? This will help me know if I need to pursue appts. with PANDAS specialists or if I need to look elsewhere for answers.

 

Thank you so much for your time,

Sincerely,

Amy Hitchcock

 

Her response to me (edited somewhat, as I do not have response saved on my computer):

Strickly speaking, a strep carrrier is someone who doesn't clear strep in response to ABX and in most cases, does't have a titer rise ( indicating that the step hasn't actually "infected" the child b/c it hasn't acticated the immune system.) If your daughter clears the strep each time she receives a course of ABX, then she's not a carrier, but just one of the 5% of children unusually susceptible to strep (this made perfect sense to me as my daughter had strep as a baby at 7 weeks, 3 months, 6 months and so on). At 4.5 she may also be getting reinfected due to poor hygeniene practice (fingers in mouth etc). We have seen many children who met al criteria for PANDAS without having a rise in ASO titers and antistrep DNASE titers. WHen we check ACHO and some other strep titers, they are usually posiitive on at least one, but those are done for research only.

 

The immunologist is right to be concerned about unnecessary use of phophylaxis, so it might be useful to stop it and chech throat culture in 3 days. If it's negative, just watch her and going forward and if symptoms return, culture her again, if positive treat and then start prophylaxis. If her throat culture is postitve for strep , then her pediatrician should treat following the AAP "red book" guidelines for clearance of group A beta-strepoccacal infections. She should have 2 negative strep cultures at least 2 days apart before clearing her free of strep. At that point it should do no harm following the course of treatment I sketched above, obtain cultures, if OCD returns and treat if possitive.

 

Good Luck!

 

She ended up being positive for strep on that culture 3 days later-treated with Clindamycin and she was free of strep for nearly a year, without prohylaxis. Until one day last MAy when it all came back with a vengence. She is now on daily prophylaxis, which we are always playing with the dosage and med itself-don't have her 100% yet.

Here we are, just over 2 years later, still battling PANDAS. My daughter is on the milder side of this, with mainly movement issues (tics and chorea) and mild OCD and emotional lability. If any doc ever suggests my daughter is a carrier or questions use of prophylaxis, I flip to this page in my binder to show them Dr. Swedo's tx. recommendations. After all she coined the dx PANDAS.

Argh...I don't know if my daughter cleared on clindamycin or not. 2 days after finishing, she tested positive on the rapid, but was culture neg. So does that mean she cleared?

[AmySLP]

Don't know what to say...my daughter's had the same---positive rapids, neg. cultures. We only tested with rapids at that time If a rapid was positive, we stoppped there. The one time we had that problem, it was sent out only b/c the doc. already had it prepared.

 

It's an odd result---