Found my strep carrier!

[momcap]

Finally some answers! I took everyone in for ASO titers which came back normal and I was really disappointed. BUt I also asked for throat swabs which came back today. I was very surprised that our carrier is the healthy "normal" child. I was expecting it to be the asthmatic, chronic ear infection one. Geez! At last I feel like the puzzle pieces are coming together. PANDAS DS(7) really has an impossible time getting along with CARRIER DS(5). He refuses to touch him and is so mean to him - has been since they were babies. This week he told me he won't touch him because "I just really don't like him." It breaks my heart. I don't know why I didn't see this coming! So basically one kid is "allergic" to the other kid. How do we eradicate carrier status? Or do we need 2 separate homes. JK!

[EAMom]

Finally some answers! I took everyone in for ASO titers which came back normal and I was really disappointed. BUt I also asked for throat swabs which came back today. I was very surprised that our carrier is the healthy "normal" child. I was expecting it to be the asthmatic, chronic ear infection one. Geez! At last I feel like the puzzle pieces are coming together. PANDAS DS(7) really has an impossible time getting along with CARRIER DS(5). He refuses to touch him and is so mean to him - has been since they were babies. This week he told me he won't touch him because "I just really don't like him." It breaks my heart. I don't know why I didn't see this coming! So basically one kid is "allergic" to the other kid. How do we eradicate carrier status? Or do we need 2 separate homes. JK!

 

Yup, when our dd was first diagnosed with PANDAS (age 7.5 years) I had everyone in the family throat cultured, and her assymptomatic younger sister (5 years old) turned out to be positive on the rapid . We were able to clear her with 5 days of Azith. (Initially we tried to clear her with Augmentin, which didn't work.) However, she became positive 2 more times (after strep notices in school) the following school year. (That kind of made us paranoid...she ended up having a lot of throat cultures that year.) She always cleared with Azith.

 

Don't forget to change toothbrushes a couple days into a course of antibiotics. And give each child a new toothpaste too...and don't let them share toothpaste.

 

Clindamycin is another good antibiotic for clearing carriers, but the liquid version tastes nasty and you have to give it 3x daily for 10 days.

[momcap]

After telling me there is no treatment for carriers our doctor finally agreed to give us amoxicillin, which I believe is augmentin. Here's hoping it works! We found out yesterday that ds(5) was positive for strep culture with no symptoms, then today that PANDAS ds(7) also came back positive. He is having some symptoms though. He's really tired and has a tummy ache. No sore throat or fever. Does that make him a carrier too, or is he just fighting the strep in a different way than most? I'm worried the amox won't clear it. My kids have been sick more than they've been well for almost 4 years. We've all been on standard doses of amoxicillin & zithromax more times than I care to admit. I asked today about getting their tonsils out but the doctor did not sound very supportive. I don't know what else to do!

 

I know about changing toothbrushes, but it never occurred to me to give them separate toothpaste. That seems so obvious now that you pointed it out to me. Thank you!

[EmersonAilidh]

I'm glad you found your carrier!!

Sorry, I'm a little behind here, what exactly IS a carrier?? My Dad used to call me "carrier monkey" all the time because of how much I had strep. Is it just when you have strep a lot? & can you actually test for it?

[EAMom]

After telling me there is no treatment for carriers our doctor finally agreed to give us amoxicillin, which I believe is augmentin.

 

 

 

Amoxicillin is a "weaker" version of Augmentin. Here's an article that explains things http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Personally, I would be surprised if Amoxcillin cleared a carrier...Azith. or Clindamycin would be my first choice.

[EAMom]

I'm glad you found your carrier!!

Sorry, I'm a little behind here, what exactly IS a carrier?? My Dad used to call me "carrier monkey" all the time because of how much I had strep. Is it just when you have strep a lot? & can you actually test for it?

 

I think most people (docs?) would define a strep carrier as someone who cultures positive (on throat culture) for strep, yet doesn't have typical strep symptoms (sore red throat, fever, vomiting). In other words, they are assymptomatic (do PANDAS symptoms count? don't know). Strep carriers can be positive for a LONG time (months or years, according to one study) if they are not treated with (the correct) antibiotics.

[ma2ar2rm2]

"PANDAS ds(7) also came back positive"

I'm very glad you found the carrier but I"m so sorry about one child being allergic to the other.. that has to be hard.

I have a question about your PANDAS ds(7) He at this moment came back positive for strep?? Is he on a daily antibiotic for PANDAS?? The reason I'm asking is my pedi is trying to tell me since my PANDAS dd(8) is on her antibiotic twice a day that "She won't get sick, she won't get strep"

 

 

After telling me there is no treatment for carriers our doctor finally agreed to give us amoxicillin, which I believe is augmentin. Here's hoping it works! We found out yesterday that ds(5) was positive for strep culture with no symptoms, then today that PANDAS ds(7) also came back positive. He is having some symptoms though. He's really tired and has a tummy ache. No sore throat or fever. Does that make him a carrier too, or is he just fighting the strep in a different way than most? I'm worried the amox won't clear it. My kids have been sick more than they've been well for almost 4 years. We've all been on standard doses of amoxicillin & zithromax more times than I care to admit. I asked today about getting their tonsils out but the doctor did not sound very supportive. I don't know what else to do!

 

I know about changing toothbrushes, but it never occurred to me to give them separate toothpaste. That seems so obvious now that you pointed it out to me. Thank you!

[matis_mom]

Finally some answers! I took everyone in for ASO titers which came back normal and I was really disappointed. BUt I also asked for throat swabs which came back today. I was very surprised that our carrier is the healthy "normal" child. I was expecting it to be the asthmatic, chronic ear infection one. Geez! At last I feel like the puzzle pieces are coming together. PANDAS DS(7) really has an impossible time getting along with CARRIER DS(5). He refuses to touch him and is so mean to him - has been since they were babies. This week he told me he won't touch him because "I just really don't like him." It breaks my heart. I don't know why I didn't see this coming! So basically one kid is "allergic" to the other kid. How do we eradicate carrier status? Or do we need 2 separate homes. JK!

They treated our carrier with Clindamycin (but he is 14!) so it might depend on the age, but generally speaking I think amox is kind of lame?

[EAMom]

"PANDAS ds(7) also came back positive"

I'm very glad you found the carrier but I"m so sorry about one child being allergic to the other.. that has to be hard.

I have a question about your PANDAS ds(7) He at this moment came back positive for strep?? Is he on a daily antibiotic for PANDAS?? The reason I'm asking is my pedi is trying to tell me since my PANDAS dd(8) is on her antibiotic twice a day that "She won't get sick, she won't get strep"

 

 

After telling me there is no treatment for carriers our doctor finally agreed to give us amoxicillin, which I believe is augmentin. Here's hoping it works! We found out yesterday that ds(5) was positive for strep culture with no symptoms, then today that PANDAS ds(7) also came back positive. He is having some symptoms though. He's really tired and has a tummy ache. No sore throat or fever. Does that make him a carrier too, or is he just fighting the strep in a different way than most? I'm worried the amox won't clear it. My kids have been sick more than they've been well for almost 4 years. We've all been on standard doses of amoxicillin & zithromax more times than I care to admit. I asked today about getting their tonsils out but the doctor did not sound very supportive. I don't know what else to do!

 

I know about changing toothbrushes, but it never occurred to me to give them separate toothpaste. That seems so obvious now that you pointed it out to me. Thank you!

 

There are kids in this forum who have gotten strep while on antibiotics...it is possible.

 

And, even if you child is on treatment strength antibiotics, they can still respond/react to another with a strep infection, even if they don't actually get a full-blown infection.

[EAMom]

Finally some answers! I took everyone in for ASO titers which came back normal and I was really disappointed. BUt I also asked for throat swabs which came back today. I was very surprised that our carrier is the healthy "normal" child. I was expecting it to be the asthmatic, chronic ear infection one. Geez! At last I feel like the puzzle pieces are coming together. PANDAS DS(7) really has an impossible time getting along with CARRIER DS(5). He refuses to touch him and is so mean to him - has been since they were babies. This week he told me he won't touch him because "I just really don't like him." It breaks my heart. I don't know why I didn't see this coming! So basically one kid is "allergic" to the other kid. How do we eradicate carrier status? Or do we need 2 separate homes. JK!

They treated our carrier with Clindamycin (but he is 14!) so it might depend on the age, but generally speaking I think amox is kind of lame?

 

Yeah. our ped originally wanted to put our (5 year old at the time) carrier on Clindamycin when the augmentin failed. But it tasted so nasty our dd refused to take it (1 hour and lots of tears to get 1 dose down). So, we ended up switching to Azith.

[EmersonAilidh]

I'm glad you found your carrier!!

Sorry, I'm a little behind here, what exactly IS a carrier?? My Dad used to call me "carrier monkey" all the time because of how much I had strep. Is it just when you have strep a lot? & can you actually test for it?

 

I think most people (docs?) would define a strep carrier as someone who cultures positive (on throat culture) for strep, yet doesn't have typical strep symptoms (sore red throat, fever, vomiting). In other words, they are assymptomatic (do PANDAS symptoms count? don't know). Strep carriers can be positive for a LONG time (months or years, according to one study) if they are not treated with (the correct) antibiotics.

 

So there is no "carrier" test? Is it at all possible to be a carrier WITH P.A.N.D.A.S?? Sorry for all this. :/ I've just never asked about this before. I was positive for strep for literally nine years (5-14), completely asymptomatic nine out of ten times. My pediatrician just started swabbing me everytime she saw me just because she couldn't believe it. The first time I had blood drawn at the BAD neurologist's office, I laughed while I said "Check my ASO, I dare you", but he wasn't laughing when it came back skyhigh & I had NO strep signs. I've had a strep rash ONCE & I get the "sore throat" every now & then (& ONLY when it's going around). The past two negatives have been the past two times when I went in because my throat hurt, ironically enough. I've only had two negative strep cultures, both within the past twelve months. I've also only ever had one negative/normal ASO titer, which was in August. What could all of that mean?? :/

[EAMom]

I'm glad you found your carrier!!

Sorry, I'm a little behind here, what exactly IS a carrier?? My Dad used to call me "carrier monkey" all the time because of how much I had strep. Is it just when you have strep a lot? & can you actually test for it?

 

I think most people (docs?) would define a strep carrier as someone who cultures positive (on throat culture) for strep, yet doesn't have typical strep symptoms (sore red throat, fever, vomiting). In other words, they are assymptomatic (do PANDAS symptoms count? don't know). Strep carriers can be positive for a LONG time (months or years, according to one study) if they are not treated with (the correct) antibiotics.

 

So there is no "carrier" test? Is it at all possible to be a carrier WITH P.A.N.D.A.S?? Sorry for all this. :/ I've just never asked about this before. I was positive for strep for literally nine years (5-14), completely asymptomatic nine out of ten times. My pediatrician just started swabbing me everytime she saw me just because she couldn't believe it. The first time I had blood drawn at the BAD neurologist's office, I laughed while I said "Check my ASO, I dare you", but he wasn't laughing when it came back skyhigh & I had NO strep signs. I've had a strep rash ONCE & I get the "sore throat" every now & then (& ONLY when it's going around). The past two negatives have been the past two times when I went in because my throat hurt, ironically enough. I've only had two negative strep cultures, both within the past twelve months. I've also only ever had one negative/normal ASO titer, which was in August. What could all of that mean?? :/

 

I would call you a strep carrier...if you have had multiple swabs while assymptomatic.

 

I wonder if the 1 time out of 10 when you did have signs, if the signs were actually from a virus (while still having assymptomatic strep).

 

If your most recent throat cultures were neg, hopefully you are outgrowing the tendency to get strep. (Although that doesn't mean strep isn't hiding out elsewhere in your body.)

[thereishope]

I'm sorry but I didn't read all the responses first. The non-PANDAS child that you say is the strep carrier, did they test + multiple times? All 3 of my kids (only one is PANDAS) do not get symptoms of strep when they have strep, yet they are not carriers. I think it's determined the person is a carrier when they have no symptoms AND basic antibiotics don't clear the strep.Did someone mention to retest your kids 3 weeks after finishing meds?

Edited September 29, 2010 by Vickie

[EAMom]

I'm sorry but I didn't read all the responses first. The non-PANDAS child that you say is the strep carrier, did they test + multiple times? All 3 of my kids (only one is PANDAS) do not get symptoms of strep when they have strep, yet they are not carriers. I think it's determined the person is a carrier when they have no symptoms AND basic antibiotics don't clear the strep.Did someone mention to retest your kids 3 weeks after finishing meds?

 

Yeah...I don't actually know if there is real clarity (among the medical profession) as to what constitutes a strep carrier.

 

It is my understanding, that a "normal" person will clear strep (even without antibiotics) within a couple of weeks (read that somewhere, sorry, don't remember where). So, I think one definition could be someone that

1) is assymptomatic

2) is positive for strep longer term (more than 2 weeks)/doesn't clear naturally

 

I'm not so sure about not being cleared with basic antibiotics (do clindamycin and Azith. count)? It is my impression that carriers may be more difficult to clear (b/c they are not mounting an immune response against strep) than an average person but it is definitely possible.

 

Ed Kaplan did mention at one point that he would consider our PANDAS dd to be a strep carrier...even though she had initial (FEVER) symptoms of strep, the fact that she was still positive 2 mo. later made him consider her a carrier. (Never mind whether she eventually cleared with antibiotics).

 

But, I think that the definition of "strep carrier" remains a little fuzzy....kind of annoying that people toss those words around so much as it means different things to different docs.

 

And should a carrier have high strep titers or low? I don't think that one is known either.

Edited September 29, 2010 by EAMom

[momcap]

Thanks for all the replies! I read on another topic to re-test after 3 weeks. Our doctor wants to see just the PANDAS son 1 week after. I can't seem to make her understand our predicament. So I'm going to book appts for both boys in 3 weeks anyway. I also suspect that amoxicillin is "lame" and it won't clear the strep. But the doctor didn't want to treat with anything, saying that carriers are not treated. I had to beg for anything. I think we've been dealing with this same strep for several years and we've been on amoxicillin so many times, but it never clears anything. We've also been on zithromax repeatedly, so I would guess this is a resistant strain. My doctor was not open to my suggestion of augmentin or clindamycin.

 

DS(7) was not on any antibiotic when he was swabbed. He finished 2 rounds of 10 days each of penicillin about 3 weeks prior. I can't convince either doctor to consider longer term abx, despite a remarkable decrease in symptoms while on the penicillin, and a dramatic return of symptoms when it ended.

 

DS(5) has only had one other throat swab - almost 2 years ago and it was positive, but he was symptomatic then. I don't know for sure if he is a carrier, but the doctor is saying both boys are carriers since they are asymptomatic now. I don't know what to make of this mess. Are they really asymptomatic, or are their symptoms just different than most? This morning PANDAS Ds(7) feels like he is dreaming and he is not real, he's been aggressive, defiant, crazy-hyper, and making noises non-stop. Ds(5) is dizzy, and DS(3) spiked a high fever last night. Here we go again!