Can anyone help me figure this out?

[Indigo]

Hello,

 

I have had strep throat since May. I am now on my fifth antibiotic. Meanwhile, my dd has been on Clarithromycin for 3 weeks now to treat the PANDAS. This past weekend she was very agitated...I even called her doctor to see if maybe we should try something else or up the nystatin or something. Well, he did give her Diflucan, but this was before I presented with strep starting yesterday.

 

Sooo...would strep have been in my system this past weekend with my symptoms starting yesterday....causing dd's increased agitation? Then today I started antibiotic and she had her worst day in awhile. Her throat is hoarse but she says it doesn't hurt...it could be from crying and screaming. But she is still on clarithromycin.

 

I'm confused if she would have PANDAS symptoms come up even though she is still on antibiotic. AND I'm confused of how I can possibly rid myself of this strep. I've been on oregano for several weeks now and am on another Zpack now. It's been such a horrible summer because of this, I'm just so exhausted.

[Buster]

What might be happening...

 

Hi Indigo,

 

First off, if you are cultured positive and your dd has PANDAS then this can certainly cause exacerbations even if she is on antibiotics.

 

The reason is a bit complicated. Essentially, your daughter can get recolonized with strep before her immune system can take out the bacteria even if she's on antibiotics.

 

I know this sounds strange, but many antibiotics (certainly macrolides) don't directly kill the strep. Unlike penicillan (which kills strep by weakening the cell wall of strep). Macrolides work by preventing replication of strep. They hold strep in a biostatic state until your immune system can kill it off. The advantage of macrolides is that they go intracellular (if the strep is inside cells) and also prevents replication by extracellular strep. The advantage of penicillin is it directly takes out extracellular strep (i.e., the stuff outside cells).

 

So what could happen is that your dd gets recolonized (potentially from you) in the mucosal layer of the pharanx. Strep can then invade using one of its invasins (e.g., stretolysin-0) to invade through the mucosal layer and then the clarithromycin gets a chance and stops the strep from spreading (by inhibiting a protein the strep needs to replicate).

 

It's important to note that some strep will keep replicating but most won't be able to. So now the strep is held in check waiting for her body's immune system to come and wipe out the strep with a phagocyte/T-cell. Strep is unfortunately pretty clever at evading recognition by the immune system (e.g., encapsulation) and this is why some people do better on penicillan (which kills the strep) rather than macrolides (which relies on recognition by the immune system).

 

All this could be working just fine, and her body could be mounting all the right attack, but the strep is there and can generate small amounts of exotoxins. Now her body responds and who knows what happens...

 

We basically don't know yet why the strep causes the reaction it does in PANDAS subjects or how much strep is necessary to get an exacerbation. It could be the T-cells or IgG antibodies get confused and attack neuronal tissue (Swedo and Snider's theory). It could be the exotoxins actually cross the blood-brain barrier and cause inflammation near the basal ganglia. We just don't know.

 

But what is likely happening is she's getting some of the strep in her system, her immune system is recognizing it and responding, and she gets exacerbations in behavior/tics.

 

Having now said all that -- it could be something else. Recolonization seems reasonable given what you said. Hopefully your body fights off the strep and can eradicate it so hers can do the same.

 

How long has she been on clarithromycin? Do you have any others in the house who are culture positive for strep but are asymptomatic? It actually sounds like you might be a carrier -- but you said you were symptomatic. Did you have a cough?

 

I'm really intrigued by your comment that you have had strep since May. What antibiotics have you been on and were you culture positive each time at 2 weeks after treatment?

 

Regard,

 

Buster

 

Hello,

 

I have had strep throat since May. I am now on my fifth antibiotic. Meanwhile, my dd has been on Clarithromycin for 3 weeks now to treat the PANDAS. This past weekend she was very agitated...I even called her doctor to see if maybe we should try something else or up the nystatin or something. Well, he did give her Diflucan, but this was before I presented with strep starting yesterday.

 

Sooo...would strep have been in my system this past weekend with my symptoms starting yesterday....causing dd's increased agitation? Then today I started antibiotic and she had her worst day in awhile. Her throat is hoarse but she says it doesn't hurt...it could be from crying and screaming. But she is still on clarithromycin.

 

I'm confused if she would have PANDAS symptoms come up even though she is still on antibiotic. AND I'm confused of how I can possibly rid myself of this strep. I've been on oregano for several weeks now and am on another Zpack now. It's been such a horrible summer because of this, I'm just so exhausted.

[EAMom]

Hi Indigo,

 

Perhaps an overly simplistic way to think of this is that some of these PANDAS kids act as if they are "allergic" to strep. They get 1 little exposure and their body reacts in a very dramatic fashion. So, even though your dd is on abs, the fact that she is exposed is enough to trigger a reaction, because the antibiotic can't kill off the strep quite fast enough.

 

Also, interesting to note that some PANDAS kids respond well to Keflex, Augmentin, or Amoxicillin...others do better on Azithromycin (same class as Clarithromcyin...I'm not sure if there is a pro/con to using Az. over Clar.). Nurseq's son responded well to Keflex but not Azithromycin. My daughter responded to Azithromycin but not either Amoxicillin or Keflex (actually a stronger version of Keflex, 2nd generation cephalosporin). As far as what antibiotic works, maybe it depends on the strain of strep, maybe it depends on the person, maybe whether their strep is intracellular, hiding out in more of a carrier state, or whether the strep is more actively replicating.

 

So the big question is should you continue with Clarithromycin (it sounds like it is helping) or try another type of antibiotic...or wait to see if the Clarithromcyin is effective once your strep infection is cleared?

[Buster]

How severe were exacerbations?

 

Hi Indigo,

 

I realized that I got so involved in trying to answer questions about recolonization and carrier state that I didn't check on the severity of your dd's symptoms.

 

Is her aggitation really severe (i.e., much worse that pre May?) Has this been largely going on since you first found out you had strep? Have you ever had a negative culture for strep?

 

Regards,

 

Buster

 

Recolonization seems reasonable given what you said. Hopefully your body fights off the strep and can eradicate it so hers can do the same.

 

How long has she been on clarithromycin? Do you have any others in the house who are culture positive for strep but are asymptomatic? It actually sounds like you might be a carrier -- but you said you were symptomatic. Did you have a cough?

 

I'm really intrigued by your comment that you have had strep since May. What antibiotics have you been on and were you culture positive each time at 2 weeks after treatment?

[Indigo]

Thank you guys, so much for your answers....

 

No, her symptoms are not near as severe as they were in May now that she is on antibiotic....just a bit more, making me nervous we're going to have a full blown outburst again, but actually today, on the diflucan and me on antibiotic she is quite calm again. ???? The allergy analogy makes a huge amount of sense because that is exactly how she seems to respond.

[michele]

My son is on long term antibiotics for the PANDAS. Actually he takes 250 mg of omnicef per day. However he still has set backs just from exposure to someone who is infected with the strep virus. He even flares up from getting a virus. By flare ups he doesn't get full blown episodes like before antibiotics but he still gets weird symptoms that get suddenly worse like emotional issues, tics, compulsions, urinary urges,Now it may last a couple weeks were before it went on for months. However, from repeat exposure to strep I think he has some permanent damage to the basal ganglia. Now he never fully recovers. He still always has mild tics, add, poor motor skills and compulsions. I guess he will be tourettes now as a result of the pandas. I definately recommned the book Kids in the mix. My son has many qualities of many of these syndromes. Like our ped says he has stumped many Dr's.

 

Good luck

 

Michele

Thank you guys, so much for your answers....

 

No, her symptoms are not near as severe as they were in May now that she is on antibiotic....just a bit more, making me nervous we're going to have a full blown outburst again, but actually today, on the diflucan and me on antibiotic she is quite calm again. ???? The allergy analogy makes a huge amount of sense because that is exactly how she seems to respond.

[PANDAS_Denmark]

Hi Buster,

 

Thanks a lot for this post of yours, explaining why PANDASkids (seems to) have a reaction when exposed to strep even when on antibiotics.

It made it all very clear to me, as to why my son (and other PANDASkids as well it seems) have a PANDASreaction every time he is exposed to strep (but not necessarily infected with strep to an ”extent” where a culture will show it) !

 

My son had his first PANDASepisode 3 years ago - and several episodes since then.

 

At the time he was diagnosed PANDAS, he was diagnosed with vasculitis as well - and autoimmune disease that in my sons case causes inflamation of the blood vessels.

 

As a "result" of or sign on the vasculitis, he "reacts" with petechias every time he has an infection (no matter what kind) and every time he is exposed to streptococcus (but not other bacterias/viruses it seems).

 

As a result of the PANDAS he "reacts" with OCD and/or tics too every time he has and infection (no matter what kind but especially when due to streptococcus) AND every time he is exposed to streptococcus (but no other bacterias/viruses it seems).

 

Because of the vasculitis it is very clear to see when my son has an infection or has been exposed to streptococcus : I only have to look at his skin. If he has petechias, he is infected or has been exposed to streptococcus. He even "reacts" with a scarlatiniform rash sometimes – and based on my own studies and observations, I have come to the conclusion, that the the scarlatiniform rash indicates/proves, that he has been infected with streptococcus, as streptococcus seems to be the only bacteria being able to cause this sort of rash.

 

For a year now my son has been treated profylactical with Azithromycin – and it seems as if it makes his reactions to exposure much milder. However it doesn´t (as I had hoped to) prevent his immunesystem to react when exposed (and not neccesarily infected).

 

The doctors keep telling me, that it is imposible, that he has a PANDASreaction at all, when exposed (when/if not infected), when he is on Azithromycin. They keep telling me, that his OCD and/or tics reactions are something not measurable and to some extent they tell me, that it is only something a worried mother makes up in her mind, even though also his teachers at school a very good at pinpointing too, when he has a reaction.

 

However : They agree that he reacts with petechias – not only when he is infected but also when he is exposed to bacteria/virusses. This makes me puzzled :

 

How can the doctors on one hand claim, that (in the very same child) one autoimmune disease is not ”capable” of reacting and another autoimmune disease is ”capable” of reacting, when treated the very same way and exposed to the very same trigger ??

 

The vasculitis is not a very big issue for my son - but the PANDAS surely is.

 

As such I am very interested in finding a scientific paper (or more) proving (or to some extent proving), that PANDASkids DO have a reaction when exposed to streptococcus (and/or other bacterias/virusses).

 

Have you ever come across such a paper ???

 

The reason that I am so very interested in such a paper is as follows : IF it is scientifically known, proven or even made probably, that PANDASkids DO react when exposed, even when treated profylactically (with macrolides or penicillin), one has to consider to what extend it is secure and justifiable to let a PANDASchild go to kindergarten or school every day. As stated by Mandell´s ”Principles and Practice of Infectious Diseases” streptococcus are VERY common in these environments.

 

Kind regards -

PANDAS_Denmark

[Diana]

Hi Buster,

 

Thanks a lot for this post of yours, explaining why PANDASkids (seems to) have a reaction when exposed to strep even when on antibiotics.

It made it all very clear to me, as to why my son (and other PANDASkids as well it seems) have a PANDASreaction every time he is exposed to strep (but not necessarily infected with strep to an ”extent” where a culture will show it) !

 

My son had his first PANDASepisode 3 years ago - and several episodes since then.

 

At the time he was diagnosed PANDAS, he was diagnosed with vasculitis as well - and autoimmune disease that in my sons case causes inflamation of the blood vessels.

 

As a "result" of or sign on the vasculitis, he "reacts" with petechias every time he has an infection (no matter what kind) and every time he is exposed to streptococcus (but not other bacterias/viruses it seems).

 

As a result of the PANDAS he "reacts" with OCD and/or tics too every time he has and infection (no matter what kind but especially when due to streptococcus) AND every time he is exposed to streptococcus (but no other bacterias/viruses it seems).

 

Because of the vasculitis it is very clear to see when my son has an infection or has been exposed to streptococcus : I only have to look at his skin. If he has petechias, he is infected or has been exposed to streptococcus. He even "reacts" with a scarlatiniform rash sometimes – and based on my own studies and observations, I have come to the conclusion, that the the scarlatiniform rash indicates/proves, that he has been infected with streptococcus, as streptococcus seems to be the only bacteria being able to cause this sort of rash.

 

For a year now my son has been treated profylactical with Azithromycin – and it seems as if it makes his reactions to exposure much milder. However it doesn´t (as I had hoped to) prevent his immunesystem to react when exposed (and not neccesarily infected).

 

The doctors keep telling me, that it is imposible, that he has a PANDASreaction at all, when exposed (when/if not infected), when he is on Azithromycin. They keep telling me, that his OCD and/or tics reactions are something not measurable and to some extent they tell me, that it is only something a worried mother makes up in her mind, even though also his teachers at school a very good at pinpointing too, when he has a reaction.

 

However : They agree that he reacts with petechias – not only when he is infected but also when he is exposed to bacteria/virusses. This makes me puzzled :

 

How can the doctors on one hand claim, that (in the very same child) one autoimmune disease is not ”capable” of reacting and another autoimmune disease is ”capable” of reacting, when treated the very same way and exposed to the very same trigger ??

 

The vasculitis is not a very big issue for my son - but the PANDAS surely is.

 

As such I am very interested in finding a scientific paper (or more) proving (or to some extent proving), that PANDASkids DO have a reaction when exposed to streptococcus (and/or other bacterias/virusses).

 

Have you ever come across such a paper ???

 

The reason that I am so very interested in such a paper is as follows : IF it is scientifically known, proven or even made probably, that PANDASkids DO react when exposed, even when treated profylactically (with macrolides or penicillin), one has to consider to what extend it is secure and justifiable to let a PANDASchild go to kindergarten or school every day. As stated by Mandell´s ”Principles and Practice of Infectious Diseases” streptococcus are VERY common in these environments.

 

Kind regards -

PANDAS_Denmark

[Diana]

Hi Denmark - Kurlan's latest paper - in PEDIATRICS - June 2008 - Doesn't conclusively prove PANDAS exists but it does state that kids exposed to strep and even other bacteria seem to have exacerbations. Your son continues to show reactions despite being on prophylaxis because PANDAS kids do that - period. Either because they are having an autoimmune reaction to immunity boosts to illness OR because the bacteria is still in our kids' bodies - only held at bay by the antibiotics. If you can't find the link to this on the internet - let me know.

 

 

 

 

Hi Buster,

 

Thanks a lot for this post of yours, explaining why PANDASkids (seems to) have a reaction when exposed to strep even when on antibiotics.

It made it all very clear to me, as to why my son (and other PANDASkids as well it seems) have a PANDASreaction every time he is exposed to strep (but not necessarily infected with strep to an ”extent” where a culture will show it) !

 

My son had his first PANDASepisode 3 years ago - and several episodes since then.

 

At the time he was diagnosed PANDAS, he was diagnosed with vasculitis as well - and autoimmune disease that in my sons case causes inflamation of the blood vessels.

 

As a "result" of or sign on the vasculitis, he "reacts" with petechias every time he has an infection (no matter what kind) and every time he is exposed to streptococcus (but not other bacterias/viruses it seems).

 

As a result of the PANDAS he "reacts" with OCD and/or tics too every time he has and infection (no matter what kind but especially when due to streptococcus) AND every time he is exposed to streptococcus (but no other bacterias/viruses it seems).

 

Because of the vasculitis it is very clear to see when my son has an infection or has been exposed to streptococcus : I only have to look at his skin. If he has petechias, he is infected or has been exposed to streptococcus. He even "reacts" with a scarlatiniform rash sometimes – and based on my own studies and observations, I have come to the conclusion, that the the scarlatiniform rash indicates/proves, that he has been infected with streptococcus, as streptococcus seems to be the only bacteria being able to cause this sort of rash.

 

For a year now my son has been treated profylactical with Azithromycin – and it seems as if it makes his reactions to exposure much milder. However it doesn´t (as I had hoped to) prevent his immunesystem to react when exposed (and not neccesarily infected).

 

The doctors keep telling me, that it is imposible, that he has a PANDASreaction at all, when exposed (when/if not infected), when he is on Azithromycin. They keep telling me, that his OCD and/or tics reactions are something not measurable and to some extent they tell me, that it is only something a worried mother makes up in her mind, even though also his teachers at school a very good at pinpointing too, when he has a reaction.

 

However : They agree that he reacts with petechias – not only when he is infected but also when he is exposed to bacteria/virusses. This makes me puzzled :

 

How can the doctors on one hand claim, that (in the very same child) one autoimmune disease is not ”capable” of reacting and another autoimmune disease is ”capable” of reacting, when treated the very same way and exposed to the very same trigger ??

 

The vasculitis is not a very big issue for my son - but the PANDAS surely is.

 

As such I am very interested in finding a scientific paper (or more) proving (or to some extent proving), that PANDASkids DO have a reaction when exposed to streptococcus (and/or other bacterias/virusses).

 

Have you ever come across such a paper ???

 

The reason that I am so very interested in such a paper is as follows : IF it is scientifically known, proven or even made probably, that PANDASkids DO react when exposed, even when treated profylactically (with macrolides or penicillin), one has to consider to what extend it is secure and justifiable to let a PANDASchild go to kindergarten or school every day. As stated by Mandell´s ”Principles and Practice of Infectious Diseases” streptococcus are VERY common in these environments.

 

Kind regards -

PANDAS_Denmark

[Diana]

Hi Denmark - Kurlan's latest paper - in PEDIATRICS - June 2008 - Doesn't conclusively prove PANDAS exists but it does state that kids exposed to strep and even other bacteria seem to have exacerbations. Your son continues to show reactions despite being on prophylaxis because PANDAS kids do that - period. Either because they are having an autoimmune reaction to immunity boosts to illness OR because the bacteria is still in our kids' bodies - only held at bay by the antibiotics. If you can't find the link to this on the internet - let me know.

 

 

 

 

Hi Buster,

 

Thanks a lot for this post of yours, explaining why PANDASkids (seems to) have a reaction when exposed to strep even when on antibiotics.

It made it all very clear to me, as to why my son (and other PANDASkids as well it seems) have a PANDASreaction every time he is exposed to strep (but not necessarily infected with strep to an ”extent” where a culture will show it) !

 

My son had his first PANDASepisode 3 years ago - and several episodes since then.

 

At the time he was diagnosed PANDAS, he was diagnosed with vasculitis as well - and autoimmune disease that in my sons case causes inflamation of the blood vessels.

 

As a "result" of or sign on the vasculitis, he "reacts" with petechias every time he has an infection (no matter what kind) and every time he is exposed to streptococcus (but not other bacterias/viruses it seems).

 

As a result of the PANDAS he "reacts" with OCD and/or tics too every time he has and infection (no matter what kind but especially when due to streptococcus) AND every time he is exposed to streptococcus (but no other bacterias/viruses it seems).

 

Because of the vasculitis it is very clear to see when my son has an infection or has been exposed to streptococcus : I only have to look at his skin. If he has petechias, he is infected or has been exposed to streptococcus. He even "reacts" with a scarlatiniform rash sometimes – and based on my own studies and observations, I have come to the conclusion, that the the scarlatiniform rash indicates/proves, that he has been infected with streptococcus, as streptococcus seems to be the only bacteria being able to cause this sort of rash.

 

For a year now my son has been treated profylactical with Azithromycin – and it seems as if it makes his reactions to exposure much milder. However it doesn´t (as I had hoped to) prevent his immunesystem to react when exposed (and not neccesarily infected).

 

The doctors keep telling me, that it is imposible, that he has a PANDASreaction at all, when exposed (when/if not infected), when he is on Azithromycin. They keep telling me, that his OCD and/or tics reactions are something not measurable and to some extent they tell me, that it is only something a worried mother makes up in her mind, even though also his teachers at school a very good at pinpointing too, when he has a reaction.

 

However : They agree that he reacts with petechias – not only when he is infected but also when he is exposed to bacteria/virusses. This makes me puzzled :

 

How can the doctors on one hand claim, that (in the very same child) one autoimmune disease is not ”capable” of reacting and another autoimmune disease is ”capable” of reacting, when treated the very same way and exposed to the very same trigger ??

 

The vasculitis is not a very big issue for my son - but the PANDAS surely is.

 

As such I am very interested in finding a scientific paper (or more) proving (or to some extent proving), that PANDASkids DO have a reaction when exposed to streptococcus (and/or other bacterias/virusses).

 

Have you ever come across such a paper ???

 

The reason that I am so very interested in such a paper is as follows : IF it is scientifically known, proven or even made probably, that PANDASkids DO react when exposed, even when treated profylactically (with macrolides or penicillin), one has to consider to what extend it is secure and justifiable to let a PANDASchild go to kindergarten or school every day. As stated by Mandell´s ”Principles and Practice of Infectious Diseases” streptococcus are VERY common in these environments.

 

Kind regards -

PANDAS_Denmark

[Diana]

Hi Denmark - Kurlan's latest paper - in PEDIATRICS - June 2008 - Doesn't conclusively prove PANDAS exists but it does state that kids exposed to strep and even other bacteria seem to have exacerbations. Your son continues to show reactions despite being on prophylaxis because PANDAS kids do that - period. Either because they are having an autoimmune reaction to immunity boosts to illness OR because the bacteria is still in our kids' bodies - only held at bay by the antibiotics. If you can't find the link to this on the internet - let me know.

 

 

 

 

Hi Buster,

 

Thanks a lot for this post of yours, explaining why PANDASkids (seems to) have a reaction when exposed to strep even when on antibiotics.

It made it all very clear to me, as to why my son (and other PANDASkids as well it seems) have a PANDASreaction every time he is exposed to strep (but not necessarily infected with strep to an ”extent” where a culture will show it) !

 

My son had his first PANDASepisode 3 years ago - and several episodes since then.

 

At the time he was diagnosed PANDAS, he was diagnosed with vasculitis as well - and autoimmune disease that in my sons case causes inflamation of the blood vessels.

 

As a "result" of or sign on the vasculitis, he "reacts" with petechias every time he has an infection (no matter what kind) and every time he is exposed to streptococcus (but not other bacterias/viruses it seems).

 

As a result of the PANDAS he "reacts" with OCD and/or tics too every time he has and infection (no matter what kind but especially when due to streptococcus) AND every time he is exposed to streptococcus (but no other bacterias/viruses it seems).

 

Because of the vasculitis it is very clear to see when my son has an infection or has been exposed to streptococcus : I only have to look at his skin. If he has petechias, he is infected or has been exposed to streptococcus. He even "reacts" with a scarlatiniform rash sometimes – and based on my own studies and observations, I have come to the conclusion, that the the scarlatiniform rash indicates/proves, that he has been infected with streptococcus, as streptococcus seems to be the only bacteria being able to cause this sort of rash.

 

For a year now my son has been treated profylactical with Azithromycin – and it seems as if it makes his reactions to exposure much milder. However it doesn´t (as I had hoped to) prevent his immunesystem to react when exposed (and not neccesarily infected).

 

The doctors keep telling me, that it is imposible, that he has a PANDASreaction at all, when exposed (when/if not infected), when he is on Azithromycin. They keep telling me, that his OCD and/or tics reactions are something not measurable and to some extent they tell me, that it is only something a worried mother makes up in her mind, even though also his teachers at school a very good at pinpointing too, when he has a reaction.

 

However : They agree that he reacts with petechias – not only when he is infected but also when he is exposed to bacteria/virusses. This makes me puzzled :

 

How can the doctors on one hand claim, that (in the very same child) one autoimmune disease is not ”capable” of reacting and another autoimmune disease is ”capable” of reacting, when treated the very same way and exposed to the very same trigger ??

 

The vasculitis is not a very big issue for my son - but the PANDAS surely is.

 

As such I am very interested in finding a scientific paper (or more) proving (or to some extent proving), that PANDASkids DO have a reaction when exposed to streptococcus (and/or other bacterias/virusses).

 

Have you ever come across such a paper ???

 

The reason that I am so very interested in such a paper is as follows : IF it is scientifically known, proven or even made probably, that PANDASkids DO react when exposed, even when treated profylactically (with macrolides or penicillin), one has to consider to what extend it is secure and justifiable to let a PANDASchild go to kindergarten or school every day. As stated by Mandell´s ”Principles and Practice of Infectious Diseases” streptococcus are VERY common in these environments.

 

Kind regards -

PANDAS_Denmark

[Diana]

Denmark - Roger Kurlan - Pediatrics - June 2008 - latest paper still does not prove conclusively PANDAS exists BUT - he followed 40 PANDAS kids and they do seem to have reactions when exposed to strep AND other bacterias. They were not apparently on antibiotics. There is no paper I believe showing how kids react to strep, etc. WHILE on antibiotics.

 

My son is on antibiotics and I can absolutely tell you there are times when he reacts to bacterial/viral infections - when he was 125 mg Azithro this was NOT enuf to protect against exacerbations. 250mg daily does the trick for him. Despite this - he, like most kids with PANDAS - still have residual symptoms while on antibiotics. They are just different then before this illness. A little more edgy, hyper, etc. at times - tho not horribly so. The many docs I've talked to think this is because 1) the autoimmune system is working on another issue and this heightens the PANDAS reactions or 2) the bacteria is lying below the radar of detection and just rears its ugly head from time to time. Fun stuff isn't it.......

[michele]

So Azith reacts intracellular? What about cephalosporins? I specifically asked our neurologist Dr Erenberg a leading tic Dr. in the nation about the difference in azith and omnicef and he said they would respond the same. I asked about the intracellular quality of azith and how it is used to treat CF and he said be glad your son doesn't have CF it is a horrible disease. Honestly, I could go back to the immunologist and try to beg for the azith but is it worth it to give azith over the Omnicef? Why do the specialist Dr. Murphy and Sweedo only recommend pen vk or augmentin ? What report has been done saying azith is the best antibiotic for PANDAS? I am asking because I have found Dr.'s here in Ohio have not a clue about PANDAS. They only will go on published studies and are not willing to try anything that has not been documented. So if you have link showing that azith is the best antibiotic to be on for PANDAS I would appreciate it. I honestly find most studies and Dr. T Murphy only recommend three weeks of antibiotics during strep episodes. I am fortunate we are on long term prohylaxis because I agree it does cut down on the severeity of the symptoms during strep exposure. My son still gets symptoms but not the full blown episodes he used to get that lasted for months. However he is never completely better since the repeat PANDAS episodes. He is always more edgy, moody, ADD, compulsive, and poor motor skills, and some tics. Has anyone ever seen the symptoms go away completely and never return? With the IVIG does the child return to how they were before the PANDAS? I really hope more studies are conducted to prove the use of long term antibiotics and IVIG for PANDAS kids. How severe should a child be before going forward with IVIG?

 

Michele

 

 

Denmark - Roger Kurlan - Pediatrics - June 2008 - latest paper still does not prove conclusively PANDAS exists BUT - he followed 40 PANDAS kids and they do seem to have reactions when exposed to strep AND other bacterias. They were not apparently on antibiotics. There is no paper I believe showing how kids react to strep, etc. WHILE on antibiotics.

 

My son is on antibiotics and I can absolutely tell you there are times when he reacts to bacterial/viral infections - when he was 125 mg Azithro this was NOT enuf to protect against exacerbations. 250mg daily does the trick for him. Despite this - he, like most kids with PANDAS - still have residual symptoms while on antibiotics. They are just different then before this illness. A little more edgy, hyper, etc. at times - tho not horribly so. The many docs I've talked to think this is because 1) the autoimmune system is working on another issue and this heightens the PANDAS reactions or 2) the bacteria is lying below the radar of detection and just rears its ugly head from time to time. Fun stuff isn't it.......

[peglem]

Michelle, I can tell you why Zith is preferred for CF. CF involves biofilms, "colonies" of pathogens that band together for mutual benefit. A hallmark of biofilms is that they produce a substance (can't remember what its called) that coats the biofilm. This coating allows the enclosed pathogens to hide from the body's immune system and protects them from immune attack. Zith is the only antibiotic that has demonstrated the ability to permeate the biofilm to destroy bacteria inside. PenVK, amoxicillan, augmentum, can only kill the bacteria that are living outside the biofilm. I think these are more often prescribed for kids, particularly long term, because they are safer than zith.

[EAMom]

Good questions Michele,

 

Here's a paper by Ed Kaplan on the effectiveness of Azithromycin (vs. pennicillin) in erradicating the carrier state.

http://www.journals.uchicago.edu/doi/abs/10.1086/508773

 

Cephalosporins, Amoxicillin, and Augmentin don't get intracellular strep.

 

Perhaps the PANDAs kids that do well on pen or augmentin are the kids that aren't carriers (don't have intracellular strep).

 

I really wish Dr. Murphy, Dr. K., others that don't employ Azithromycin would consider it's use, esp in cases where remission is not seen on other abs.

 

Augmentin, Amoxicillin, Cephalosporin (Keflex-like drug) simply did not work for us... I suspect dd and her sister (the strep carrier) had intracellular strep. Maybe we are in the minority on this one?

 

In the post "This paper has me really exciting post" by Indigo the paper talks about Th2-like dsyfunction in autism, pandas, and other autoimmune diseases. Certain therapies such as IVIG, NSAIDS (eg advil), prednisone (steroid burst), azithromycin (has anti-inflam/immunemod. properties in addition to being an ab), (possibly melatonin...I need to do more research on that one), can decrease the production of Th2 and increase Th1. In other words, these therapies (although, I would say not all are 100%, like the advil) decrease the "inappropriate/Th2" immune response that is triggering the immune attack and turn on the "appropriate/Th1" immune response to get at the intracellular strep.

 

In our case I believe the Azithromycin prophylaxis not only works as an antibiotic but also corrects dd's "inappropriate Th2 immune response."

 

I don't know why Dr. Murphy only recommends 3 weeks of abs during strep episodes. I think she should put PANDAS kids on prophylaxis.

 

RE. prophylaxis, we simply aren't willing to go through another devastating PANDAS episode with dd. In addtion, it is my belief that every episode carries the risk of some permanent brain damage and their is no guarantee that dd will recover so completely the next time around. Many docs have agreed that our regime of prophylaxis is reasonable (ped. rhumatologist at Stanford, pediatric neurologist, our ocd specialist child psychiatrist, even Ed Kaplan WHO strep expert). (I get the feeling our pediatrician doesn't really think we should be doing the ab prophylaxis but is giving in b/c she has no choice!) Prophylaxis is used for rheumatic fever to prevent heart disease /death. Why wouldn't you want to use it for PANDAS to prevent mental illness, possible brain damage, and possible death (from suicide or malnutrition)? Perhaps if dd didn't have a strep carrier sister or go to school where strep is everywhere (in other words she lived in a plastic bubble!) we would be willing to go off the abs...but that simply isn't the case.

 

Here's the Nimh study showing the effectiveness of prophylaxis in preventing ocd exacerbations in PANDAS kids. Both pen/Az. worked...(perhaps the kids with intracellular strep someone got never made it into the study?) http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

 

We were definitely ready to do the IVIG just before we discovered Azithromycin. Unfortunately, Stanford won't do it for PANDAS patients (a "political" thing IMO) so that would mean flying to Chicago to see Dr. K...

 

I don't know of any long term studies that definitively says IVIG "cures them forever"...the NIMH study went out a couple of years. Also, there are no guarentees that it will work (as Pudgeo can attest to).

 

Nevertheless if dd was still "edgy, moody, compulsive" I would definitely consider IVIG...or at least a 2-3 mo. trial of Azithromycin. (It took dd 2 mo. of Azithromycin for the tics and edginess to go away.) There is certainly enough evidence for IVIG to consider it's use.