Jump to content
ACN Latitudes Forums

Recommended Posts

Posted

Hi all, I need some advice. Brief history, two daughters, older one PANDAS. DD6 strep + 9/17, zithromax. DD7 strep + 9/20, zithromax. 10/2 DD7 cultures negative but put on 10 full dose Cefzil to make sure clear, and then once a day prophylactic dosage. 10/9 DD6 breaks elbow, and while in the er I request a strep test. (yep, the doctor did look at me funny, but she was positive). She starts 10 days amox. Because she needs surgery for the elbow and the narcotics make her vomit, she misses several doses of antibiotics. 10/15 DD7 visit to Dr. Latimer, she advises switch to prophylactic Augmentin (but doesn't recommend dosage). Talk to local pediatrician, he's on board with augmentin, prescribes 600mg 1 time per day. Both girls weight approx 45 lbs. Start 10/23 Augmentin. Today, dd7 sick, grumpy, sore throat. Both she and sister test positive on the rapid for strep. Help, what does this mean?

 

I'm thinking that dd6 never cleared the strep b/c of missed doses with elbow, but shouldn't the prophylactic abx supposed to cover dd7 from getting strep? Does this mean prophylaxis isn't working?

Our doctor is sending out the culture, he thinks we might be carriers, but dd7 had a negative culture on 10/2, and she feels cruddy, and even though she isn't full blown crazy, this sure explains a whole heck of alot. I'm not surprised she's positive, but, she hasn't been off antibiotics at all since 10/2. We have not missed a single dose. I know he doesn't really know what to do with us. Currently, while we wait for the culture, we have doubled augmentin for dd7, and dd6 is on zithromax.

 

 

Any ideas or advice? What do we do now? Up the drugs? Switch drugs? Hide until summer?

Posted
but shouldn't the prophylactic abx supposed to cover dd7 from getting strep?

 

I'll answer with a short answer first, and then add a longer answer....

 

The short answer is you can get a positive GABHS culture even if on antibiotics. The reason is that cultures check for colonizaton and not for infection.

 

A strep infection occurs in 4 stages:

  • Adhesion -- attaching,
  • Colonization -- which is what a swab/culture checks.
  • Invasion -- which is largely undetectable.
  • Infection -- which is what ASO, AntiDNAseB, ... checks.

Antibiotics can slow/stop an infection. Antibiotics don't stop an invasion (typically) but can prevent an invasion from becoming a severe infection. Many sntibiotics can't affect colonization (whether on skin or in mucosal lining). There's just not enough concentration in mucus or penetration through the epithilial cells for the antibiotic to get to the colony.

 

So child1 can recolonize child2 despite child2 being on antibiotics.

 

I'll try to post something about why can you get exacerbations from colonization only and why antibodies can go up (even though you are on prophylaxis).

 

Buster

 

P.S. Edited above to remove reference to suspended antibiotics until I can find the reference.

 

 

Hi all, I need some advice. Brief history, two daughters, older one PANDAS. DD6 strep + 9/17, zithromax. DD7 strep + 9/20, zithromax. 10/2 DD7 cultures negative but put on 10 full dose Cefzil to make sure clear, and then once a day prophylactic dosage. 10/9 DD6 breaks elbow, and while in the er I request a strep test. (yep, the doctor did look at me funny, but she was positive). She starts 10 days amox. Because she needs surgery for the elbow and the narcotics make her vomit, she misses several doses of antibiotics. 10/15 DD7 visit to Dr. Latimer, she advises switch to prophylactic Augmentin (but doesn't recommend dosage). Talk to local pediatrician, he's on board with augmentin, prescribes 600mg 1 time per day. Both girls weight approx 45 lbs. Start 10/23 Augmentin. Today, dd7 sick, grumpy, sore throat. Both she and sister test positive on the rapid for strep. Help, what does this mean?

 

I'm thinking that dd6 never cleared the strep b/c of missed doses with elbow, but shouldn't the prophylactic abx supposed to cover dd7 from getting strep? Does this mean prophylaxis isn't working?

Our doctor is sending out the culture, he thinks we might be carriers, but dd7 had a negative culture on 10/2, and she feels cruddy, and even though she isn't full blown crazy, this sure explains a whole heck of alot. I'm not surprised she's positive, but, she hasn't been off antibiotics at all since 10/2. We have not missed a single dose. I know he doesn't really know what to do with us. Currently, while we wait for the culture, we have doubled augmentin for dd7, and dd6 is on zithromax.

 

 

Any ideas or advice? What do we do now? Up the drugs? Switch drugs? Hide until summer?

Posted

Okay, the longer version:

 

So if our PANDAS child is on prophylaxis antibiotics, why did she have an exacerbation?

 

Well, this is a bit tricky but here's how I understand it...

 

Prophylaxis does not prevent strep colonization and may not prevent strep invasion but will likely prevent strep infection. The difference between these stages is that colonization occurs on the skin or mucosal lining and is typically not reached by antibiotics.

 

In healthy people, when strep invades, a wandering Macrophage comes along and finds the strep and presents a flag saying that it found strep -- this is called antigen presentation. The macrophage then runs into a T-cell that puts out a few more macrophages or a B-cell that might create some antibodies to the antigen. If the density of strep is low, then very few macrophages or antibodies are created.

 

The more bacteria, the more macrophages and antibodies find it and the more macrophages/antibodies are created. It's a race to see if the immune system will overwhelm the bacteria growth or the bacteria will grow faster than the macrophages.

 

Antibiotics slow the rate of growth of the bacteria while allowing the immune system to keep going, so antibiotics help the immune system win the race. In almost all dosages, the antibiotics are not bacteriacidal (i.e., don't kill the bacteria) in and of themselves. Even in the case of penicillin, the bacteria is replicating while the penicillin kills some.

 

So, long way of saying, if you have strep in the home, then it can recolonize on your prophylaxis kid. The antibiotic has a hard time getting to it, so in some kids it will invade. The invasion is stopped by the antibiotics (in combination with the immune system), but there will be some immune reaction. If the BBB is open, then the antibodies created to fight off the invasion will cross and we're in exacerbation.

 

Now the good news is that the invasion is likely really short lived and the antibodies aren't too many. But the antibodies hang around for 4-6 weeks, so if your child keeps getting re-exposed, then you'll get a slow build up of antibodies until you've got enough that the next time the BBB opens - boom you're there as if you were in an unprotected state.

 

Remember that PANDAS is thought to be the combination of three events:

  • an immune response to GABHS that creates a faulty antibody
  • a failure of the T-regulatory system to suppress the faulty antibody
  • a breach of the blood brain barrier

The antibodies tend to have a half-life of 4-6 weeks and thus if your BBB is closed, the antibodies may still be circulating but not causing any problems. Now if you have a BBB breach (due to stress, blood pressure, infection, ...) then symptoms can occur just from the antibodies "floating around".

 

Antibiotics don't get rid of antibodies, they can help reduce new antibodies.

 

Phew,

 

Buster

Posted
Hi nojo,

 

This is a tough question to answer, but see if this helps.

 

PANDAS is thought to be the combination of three events:

  • an immune response to GABHS that creates a faulty antibody
  • a failure of the T-regulatory system to suppress the faulty antibody
  • a breach of the blood brain barrier

The antibodies tend to have a half-life of 4-6 weeks and thus if your BBB is closed, the antibodies may still be circulating but not causing any problems. Now if you have a BBB breach (due to stress, blood pressure, infection, ...) then symptoms can occur from an old infection.

 

Antibiotics don't get rid of antibodies, they can help reduce new antibodies -- I'll get to that in a moment.

 

Okay?

 

Now to the question of others in the family causing increase in symptoms in your PANDAS child. We definitely saw that. Actually when our PANDAS dd was in an exacerbation we could take our non-PANDAS child in and she'd be positive for strep. After treatment we did verify that she was clear of strep 3 weeks later so this isn't classic carrier state.

 

So if our PANDAS child is on prophylaxis antibiotics, why did she have an exacerbation?

 

Well, this is a bit tricky but here's how I understand it...

 

Prophylaxis does not prevent strep colonization and may not prevent strep invasion but will likely prevent strep infection. The difference between these stages is that colonization occurs on the skin or mucosal lining and is typically not reached by antibiotics.

 

In healthy people, when strep invades, a wandering Macrophage comes along and finds the strep and presents a flag saying that it found strep -- this is called antigen presentation. The macrophage then runs into a T-cell that puts out a few more macrophages or a B-cell that might create some antibodies to the antigen. If the density of strep is low, then very few macrophages or antibodies are created.

 

The more bacteria, the more macrophages and antibodies find it and the more macrophages/antibodies are created. It's a race to see if the immune system will overwhelm the bacteria growth or the bacteria will grow faster than the macrophages.

 

Antibiotics slow the rate of growth of the bacteria while allowing the immune system to keep going, so antibiotics help the immune system win the race. In almost all dosages, the antibiotics are not bacteriacidal (i.e., don't kill the bacteria) in and of themselves. Even in the case of penicillin, the bacteria is replicating while the penicillin kills some.

 

So, long way of saying, if you have strep in the home, then it can recolonize on your prophylaxis kid. The antibiotic has a hard time getting to it, so in some kids it will invade. The invasion is stopped by the antibiotics (in combination with the immune system), but there will be some immune reaction. If the BBB is open, then the antibodies created to fight off the invasion will cross and we're in exacerbation.

 

Now the good news is that the invasion is likely really short lives and the antibodies aren't too many. But the antibodies hang around for 4-6 weeks, so if your child keeps getting re-exposed, then you'll get a slow build up of antibodies until you've got enough that the next time the BBB opens - boom you're there as if you were in an unprotected state.

 

Hope that explains it... I should stress that everything above is my understanding of what is happening but I'm not 100% sure it is right. It just fits the pattern in our house.

 

Phew.

 

Buster

 

Hi all, I need some advice. Brief history, two daughters, older one PANDAS. DD6 strep + 9/17, zithromax. DD7 strep + 9/20, zithromax. 10/2 DD7 cultures negative but put on 10 full dose Cefzil to make sure clear, and then once a day prophylactic dosage. 10/9 DD6 breaks elbow, and while in the er I request a strep test. (yep, the doctor did look at me funny, but she was positive). She starts 10 days amox. Because she needs surgery for the elbow and the narcotics make her vomit, she misses several doses of antibiotics. 10/15 DD7 visit to Dr. Latimer, she advises switch to prophylactic Augmentin (but doesn't recommend dosage). Talk to local pediatrician, he's on board with augmentin, prescribes 600mg 1 time per day. Both girls weight approx 45 lbs. Start 10/23 Augmentin. Today, dd7 sick, grumpy, sore throat. Both she and sister test positive on the rapid for strep. Help, what does this mean?

 

I'm thinking that dd6 never cleared the strep b/c of missed doses with elbow, but shouldn't the prophylactic abx supposed to cover dd7 from getting strep? Does this mean prophylaxis isn't working?

Our doctor is sending out the culture, he thinks we might be carriers, but dd7 had a negative culture on 10/2, and she feels cruddy, and even though she isn't full blown crazy, this sure explains a whole heck of alot. I'm not surprised she's positive, but, she hasn't been off antibiotics at all since 10/2. We have not missed a single dose. I know he doesn't really know what to do with us. Currently, while we wait for the culture, we have doubled augmentin for dd7, and dd6 is on zithromax.

 

 

 

Any ideas or advice? What do we do now? Up the drugs? Switch drugs? Hide until summer?

Buster, thank you for trying to explain that to me in language I can understand, and I do think I understand what you are saying, but I want to restate it, to make sure I understand it. Because we've had so much strep in our home, my daughter may not currently have an active infection, but still be experiencing a flare up of symptoms because of the old antigens that are still circulating from previous infections.

 

If the rapid test was positive, but the culture does not grow, that would suggest either colonization, or invasion, but not necessarily an active infection.

 

If the culture grows, does that suggest an active infection? Does that mean the prophylactic antibiotic wouldn't be strong enough or not the right one?

 

Finally, we are one of the people that didn't do so well on our immune work up. Specifically our Igg levels were too low. When we saw the immunologist, he suggested that although our numbers were low, we were making a response to our vaccinations, so the igg cells were doing what was needed. He was going to do some sort of work up involving I believe the T and B cells, but we opted out at the time since we have had so much invasive testing done. From the way you are describing antibiotics, if our immune system isn't working correctly, could we never be eradicating the strep? Is this the reason that ivig is needed to heal, to give more of the good guys to fight?

 

I know you aren't a doctor, just a dad who has really worked hard to understand all of this, and I truly appreciate you taking the time that you do to explain so much on this board. I've read many of your posts, and it really has helped me and my daughter.

Posted
Because we've had so much strep in our home, my daughter may not currently have an active infection, but still be experiencing a flare up of symptoms because of the old antigens that are still circulating from previous infections.

Sort of. Replace antigens with antibodies. The flare up could come from old antibodies that are still circulating from previous infections.

 

If the rapid test was positive, but the culture does not grow, that would suggest either colonization, or invasion, but not necessarily an active infection.

 

Not exactly. The rapid and the culture are both essentially the same test (whether there is colonized strep on the mucosal lining). The rapid tends to check for a carbohydrate, the culture looks for a tell-tale growth pattern. If the culture doesn't grow it likely means a bad swab. It could also be a false positive on the rapid (less likely).

 

If the culture grows, does that suggest an active infection? Does that mean the prophylactic antibiotic wouldn't be strong enough or not the right one?

 

No, it means that your child is getting recolonized. Typically recolonization leads infection. This is why only a throat swab is necessary to recommend antibiotics. Colonization means it's on the mucosal lining but might not be getting into the blood stream. If you are getting an infection and/or the colony isn't clearing, then yes, the antibiotic dose isn't the right one, not strong enough, or you may be IgA deficient.

 

Finally, we are one of the people that didn't do so well on our immune work up. Specifically our Igg levels were too low. When we saw the immunologist, he suggested that although our numbers were low, we were making a response to our vaccinations, so the igg cells were doing what was needed. He was going to do some sort of work up involving I believe the T and B cells, but we opted out at the time since we have had so much invasive testing done. From the way you are describing antibiotics, if our immune system isn't working correctly, could we never be eradicating the strep? Is this the reason that ivig is needed to heal, to give more of the good guys to fight?

 

Sort of. Yes, IVIG can help provide missing antibodies but there are several other effects of IVIG. One of them is just the closure of the BBB. IVIG is highly anti-inflammatory. In addition, IVIG is thought to cause a reset to the T-regulator cells thereby causing the T-regulators to suppress the faulty antibody creation. Essentially this is why IVIG is sometimes called internal plasmapherisis because it can suppress the "bad" antibodies and remove them.

 

Best regards,

 

Buster

 

P.S. I modified my earlier posts hoping they are now clearer

Posted
Buster, you mention "especially if an antibiotic isn't liquid."

 

Is liquid zithromycin preferable to the 250mg tablets?

 

Sorry, I'm trying to find the reference, but I think it was only about augmentin/penicillin derivatives. If I find it, I'll post it. The actual study was about testing invitro (i.e., direct contact). Searching now (even in my archives) I can't find the actual paper. Probably should have removed the sentence from the post till I can find the paper.

 

Buster

Posted

Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

Posted
Okay, the longer version:

 

So if our PANDAS child is on prophylaxis antibiotics, why did she have an exacerbation?

 

Well, this is a bit tricky but here's how I understand it...

 

Prophylaxis does not prevent strep colonization and may not prevent strep invasion but will likely prevent strep infection. The difference between these stages is that colonization occurs on the skin or mucosal lining and is typically not reached by antibiotics.

 

In healthy people, when strep invades, a wandering Macrophage comes along and finds the strep and presents a flag saying that it found strep -- this is called antigen presentation. The macrophage then runs into a T-cell that puts out a few more macrophages or a B-cell that might create some antibodies to the antigen. If the density of strep is low, then very few macrophages or antibodies are created.

 

The more bacteria, the more macrophages and antibodies find it and the more macrophages/antibodies are created. It's a race to see if the immune system will overwhelm the bacteria growth or the bacteria will grow faster than the macrophages.

 

Antibiotics slow the rate of growth of the bacteria while allowing the immune system to keep going, so antibiotics help the immune system win the race. In almost all dosages, the antibiotics are not bacteriacidal (i.e., don't kill the bacteria) in and of themselves. Even in the case of penicillin, the bacteria is replicating while the penicillin kills some.

 

So, long way of saying, if you have strep in the home, then it can recolonize on your prophylaxis kid. The antibiotic has a hard time getting to it, so in some kids it will invade. The invasion is stopped by the antibiotics (in combination with the immune system), but there will be some immune reaction. If the BBB is open, then the antibodies created to fight off the invasion will cross and we're in exacerbation.

 

Now the good news is that the invasion is likely really short lived and the antibodies aren't too many. But the antibodies hang around for 4-6 weeks, so if your child keeps getting re-exposed, then you'll get a slow build up of antibodies until you've got enough that the next time the BBB opens - boom you're there as if you were in an unprotected state.

 

Remember that PANDAS is thought to be the combination of three events:

  • an immune response to GABHS that creates a faulty antibody
  • a failure of the T-regulatory system to suppress the faulty antibody
  • a breach of the blood brain barrier

The antibodies tend to have a half-life of 4-6 weeks and thus if your BBB is closed, the antibodies may still be circulating but not causing any problems. Now if you have a BBB breach (due to stress, blood pressure, infection, ...) then symptoms can occur just from the antibodies "floating around".

 

Antibiotics don't get rid of antibodies, they can help reduce new antibodies.

 

Phew,

 

Buster

Wow, what a great explanation... I have to print this out for my husband. I sort of half-get why they act-up when exposed to strep (even while on abx), but couldn't explain it to my husband, now he'll get it :)

 

Our PANDA ds was experiencing a flare-up over the weekend, and his sister tested positive for strep on Monday. He seems totally fine today (at least during the day), but we'll see, bedtime is our most challenging time of day. We got the three younger kids tested, all negative on the rapid, but the three-year old has a fever of 103 right now! I went to get myself checked, and the dr. said the test is not 100% accurate. I will probably take the 3-yo back to the pediatrician tomorrow to see if they will just give the antibiotics based on the symptoms. With 7 kids I can't wait and see, I need to put out this fire soon!

 

Isabel

Posted
Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

 

I'd jump for joy anyway...if it comes back, there will be time to grieve later! This is where I'm at...a lot of times progress has been stolen back away, so my philosophy is to celebrate whenever I can, no matter how briefly!

Posted

I'm with Peglem here!

 

Jump for Joy with whatever you are doing.

 

I don't think we know, but prophylaxis seems to be working in all our cases and in Swedo's cases. IVIG and PEX had more dramatic near term effect for severe cases. In our case it seemed to be necessary to get her back to a baseline (i.e., we didn't change any other treatment -- we've only changed one variable at a time).

 

I fear that we still have to be religous about prophylaxis for a long time. We're hopeful that IVIG did some other things (such as play with the T-regs) but there's no science there that helps us with any confidence. I expect we'll be on prophylaxis for a long time.

 

We too are just happy for the moment... and recovering.

 

Best regards,

 

Buster

 

Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

 

I'd jump for joy anyway...if it comes back, there will be time to grieve later! This is where I'm at...a lot of times progress has been stolen back away, so my philosophy is to celebrate whenever I can, no matter how briefly!

Posted

Ok thanks for the response guys. I'm always so cautious about being excited but I will gently jump for joy a little.

 

 

 

Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

 

I'd jump for joy anyway...if it comes back, there will be time to grieve later! This is where I'm at...a lot of times progress has been stolen back away, so my philosophy is to celebrate whenever I can, no matter how briefly!

Posted
Our PANDA ds was experiencing a flare-up over the weekend, and his sister tested positive for strep on Monday.

 

Oddly, that is what was happening in our house. If our PANDAS ds was having a flare-up, we'd take her sister in and sure enough her sister would be positive for GABHS. We did run cultures at 3weeks post treatment to see if her sister cleared of GABHS (yes, she cleared). This happened 4 times last year. Our pediatrician kept asking us how we knew. We told her our canary told us :-)

 

Buster

Posted
If the culture grows, does that suggest an active infection? Does that mean the prophylactic antibiotic wouldn't be strong enough or not the right one?

 

No, it means that your child is getting recolonized. Typically recolonization leads infection. This is why only a throat swab is necessary to recommend antibiotics. Colonization means it's on the mucosal lining but might not be getting into the blood stream. If you are getting an infection and/or the colony isn't clearing, then yes, the antibiotic dose isn't the right one, not strong enough, or you may be IgA deficient.

 

So a positive swab might mean the prophylatic abs are still okay...or not. IMO, I would ere on the side of caution and either up the abs or switch to something stronger.

Posted
Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

 

Have you done steroids yet? Some parents (T.mom, Kayanne) have found that they are able to get back to 100% (or close) by adding steroids to the abs. I believe they did more than a short 5 day burst...more like 1 mo. of steroids. Of course I might be a little nervous about doing a bunch of steroids in the middle of flu season. :)

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...