Strep carriers

[marylandmom]

Hi,

we have a dd(8) who we just received Cunningham Camkinase results( 157).

I have little time right now and will elaborate more on our past 8 months of craziness later but here is my question...

we determined that our dd(4) was our "carrier" this summer. Everyone in the house has been treated to get rid of the strep.......but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well?

Thanks

[LaraM]

My husband and I both tested positive as strep carriers as well. We were treated, but told the treatment only lasts about a year and then we'd have to be re-treated as it is pretty much a part of us. We're all taking Azith (even the dog was treated) long term per docs orders.

[marylandmom]

My husband and I both tested positive as strep carriers as well. We were treated, but told the treatment only lasts about a year and then we'd have to be re-treated as it is pretty much a part of us. We're all taking Azith (even the dog was treated) long term per docs orders.

Hi,

thanks for your response. By "treated" do you mean a session of oral antibiotics or something else? When we realized my dd(4) had it ( no symptoms) and had, basically, been passing it back and forth to my older dd the Dr gave all of us oral antibiotics. We had to go through two to get it right on the younger dd and we had everyone tested to ensure it was GONE. So, is that enough or is there something else we should do?

[matis_mom]

Hi,

we have a dd(8) who we just received Cunningham Camkinase results( 157).

I have little time right now and will elaborate more on our past 8 months of craziness later but here is my question...

we determined that our dd(4) was our "carrier" this summer. Everyone in the house has been treated to get rid of the strep.......but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well?

Thanks

Hi there!

We also had one treated as carrier, and in general none of my kids show symptoms. So if you see your PANDAS dd ramping up, check everyone in the family. It has always been the case for us when PANDAS ds starts going downhill, we find someone has strep without symptoms.

Also, see you are in Maryland (right?) I would check everyone for Lyme Disease via a Western Blot. We all kept getting strep and now it turns out a number of us (including PANDAS ds) have Lyme, and I do think this is the reason we kept getting sick.

[momcap]

Hi,

we have a dd(8) who we just received Cunningham Camkinase results( 157).

I have little time right now and will elaborate more on our past 8 months of craziness later but here is my question...

we determined that our dd(4) was our "carrier" this summer. Everyone in the house has been treated to get rid of the strep.......but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well?

Thanks

 

I'm sorry I don't know the answer to your question, but I have a question for you if you don't mind. What did you do to eliminate the carrier status in your dd? We just found out today that our ds(5) is our carrier. I'm still worrying about how to eliminate the carrier status, and it never even crossed my mind that future outbreaks could also be asymptomatic. Yikes! I'm looking forward to seeing the responses to your question. Thanks!

[marylandmom]

Hi,

we have a dd(8) who we just received Cunningham Camkinase results( 157).

I have little time right now and will elaborate more on our past 8 months of craziness later but here is my question...

we determined that our dd(4) was our "carrier" this summer. Everyone in the house has been treated to get rid of the strep.......but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well?

Thanks

Hi there!

We also had one treated as carrier, and in general none of my kids show symptoms. So if you see your PANDAS dd ramping up, check everyone in the family. It has always been the case for us when PANDAS ds starts going downhill, we find someone has strep without symptoms.

Also, see you are in Maryland (right?) I would check everyone for Lyme Disease via a Western Blot. We all kept getting strep and now it turns out a number of us (including PANDAS ds) have Lyme, and I do think this is the reason we kept getting sick.

Is the "western blot" different from a lyme test Dr. L would have pulled? She did a series of blood work for our dd(9) at the end of the summer and lyme came back negative. She also had us do the Cunningham test (just got half of those results back----no shocker there, I KNEW it would be high). Still waiting to get the rest of those results. In the meantime I am not sure what to even "do" with the CamKinase results. Since we are not in an exacerbation right now ( and we started some prozac that has REALLY HELPED) I am not sure what to do. I guess now that we have some "confirmation" ( can we call it that?) we know to go see Dr. L next time we start to ramp up.

[EAMom]

Hi...I'm copying my response from another thread:

 

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.

 

Our "carrier" is now in 2nd grade. She was an assymptomatic carrier in pre-school (when PANDAS dd/2nd gr. was first diagnosed), and then again 2x in kindergarten. She wasn't positive in 1st grade at all (we tested her periodically) but also didn't get any strep notices in school. So...who knows what will happen this year?

[EAMom]

.but the pediatrician the other day alluded to the fact that now that our dd(4) has been cleared of the strep, she is no longer the carrier. Is this true? Or should we expect that her future strep outbreaks will be assymptomatic as well?

Thanks

 

Even though she isn't currently "the carrier", she is likely to be a carrier (and assymptomatic) again in the future.

 

I would consider my 2nd grader to be "a strep carrier" even though she isn't currently culture positive....but I suppose that may be a matter of how you technically define "strep carrier".

 

Does that make any sense?

 

Of course it's possible, that as our "carriers" grow (and their immune system matures) that they will stop being so prone to getting strep (whether assymptomatic or not).

Edited September 28, 2010 by EAMom

[airial95]

I can give you my experience. We haven't found a carrier in the family since our PANDAS dx, and we've checkd a few times. However, whenever we have a confirmed exposure, our pediatrician has us using muciroprin (sp?) ointment in the whole family's nostrils. According to him, the bacteria can be harbored in the nostrils and it won't be caught by abx or a throat culture. He has us do it to safeguard against carriers.

 

With that being said - when I was a kid I got chronic strep (no PANDAS though). It wasn't until I was hospitalized in jr high after going 4 or 5 rounds of differnt abx with no resolution (they finally resorted to IV abx) that a nurse in the hospital (yes a nurse - not any of the many dr's we talked to - including my pediatrician) asked if the family was tested for carriers. Sure enough - my sister had it the whole time, which is why I wouldn't clear - as soon as I went off abx - she passed it right back along to me. After that, everytime I came down with strep (which was 4-6 times a year easy) they tested my sister, and she was positive every time. So they treated her with a course of abx too and it usually cleared - until the next time. It turned out she was just a prone to catching strep as I was - but she was almost ALWYAS asymptomatic, so we never knew.

 

So the moral of my story - even if your other child has cleard up as a carrier, it doesn't mean that upon the next time she's exposed to strep she won't catch it again, and just be asymptomatic. Some others have said it best - if you see a ramp up of symptoms in your PANDAS kid - get your carrier checked too!

[EAMom]

I forgot to mention, be sure to check the CARRIER 3-4 weeks after to last antibiotic dose to make sure they clear. If you check too soon, you could get a false negative. (Or you could check after 1 week, and again after 1 mo.)

[LaraM]

My husband and I both tested positive as strep carriers as well. We were treated, but told the treatment only lasts about a year and then we'd have to be re-treated as it is pretty much a part of us. We're all taking Azith (even the dog was treated) long term per docs orders.

Hi,

thanks for your response. By "treated" do you mean a session of oral antibiotics or something else? When we realized my dd(4) had it ( no symptoms) and had, basically, been passing it back and forth to my older dd the Dr gave all of us oral antibiotics. We had to go through two to get it right on the younger dd and we had everyone tested to ensure it was GONE. So, is that enough or is there something else we should do?

[LaraM]

We were given z-packs. We started with one week, but had another week and now take a 500 mg azith per week (the whole family does) long term. We were given a five month supply, but I don't know how long "long term" we will be taking it. We haven't been retested, but our doc said if ds5 and now ds7 start becoming symptomatic again, we'd repeat the tests to see if it's still lingering. Our dog was also treated with 14 days of antibiotics--we didn't have her tested as our vet said you may get a false negative result depending on where you swab. He just treated her as if she was positive.

 

Unfortunately, our doc left the practice and our new doc hasn't elaborated on the protocol we'll follow regarding our carrier status. We go to our new doc in about three weeks. I will ask and let you know what he says. Our appointments have been full of trying to get yeast and clostridia under control.