Important To Understand!

[sf_mom]

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

[melanie]

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

 

 

So are you saying that kids who were treated early on in life and then not treated and then treated again can be cures and are they treated with IVIG ?This stuff baffles me.

[sf_mom]

Not at all. These children are potentially exposed to a resilient strain of strep, the typical immune response does not occur due to age, a secondary response does, no cross immunity develops due to age, each time they are reexposed to any strain of strep they get worse due to lack of overall immunity.

 

Hopefully, that helps.... My father-in-law also speculates on why certain forms of treatments work or have relapses.

 

-Wendy

[Ellen]

This is interesting. Thanks for sharing this information. Does your father-in-law believe IVIG in combination with high dose antibiotics can "jump start" the immune system so that it can eventually function effectively without requiring the donor IGG? Does he believe that the immune system can create some kind of memory so that these kids don't have to continue IVIG indefinitely throughout their lives to stay well.

 

Ellen

 

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

[sf_mom]

Yes and eventually cross immunity occurs and they will 'hopefully' no longer require antibiotics. You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally. The IVIG and antibiotics help to get them there.

 

-Wendy

 

 

 

 

This is interesting. Thanks for sharing this information. Does your father-in-law believe IVIG in combination with high dose antibiotics can "jump start" the immune system so that it can eventually function effectively without requiring the donor IGG? Does he believe that the immune system can create some kind of memory so that these kids don't have to continue IVIG indefinitely throughout their lives to stay well.

 

Ellen

 

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

[fuelforall]

Yes and eventually cross immunity occurs and they will 'hopefully' no longer require antibiotics. You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally. The IVIG and antibiotics help to get them there.

 

-Wendy

 

 

[ Wendy this is great stuff, thanks a lot. Like to hear other reactions from around our community.

Michael

[faith]

Wendy,

thanks for sharing these thoughts. just to clarify,......

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

.......by IGG, you mean the Immunoglobulin? and by (AB), you mean antibodies?

 

 

 

and.....

 

Yes and eventually cross immunity occurs and they will 'hopefully' no longer require antibiotics. You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally. The IVIG and antibiotics help to get them there.

 

 

...Are the S.pryyogenes the problem? are they and antibodies one and the same? When you say "keep it at a level", ...is the "it" referring to antibodies or the bacteria?

 

Basically, who is the bad boy?

 

 

thanks,

Faith

[sf_mom]

Igg is IVIG and by (AB) he means, the secondary immune response antibody.

 

Yes, he does believes the S. pyogenes is the problem (same strains that causes RF), its the lack of ones ability to mount a proper response due to age and lack of cross immunity to other stains of strep. Think of it this way, if one had not been exposed to S Pyogenes early in life, one would develop cross immunity from other strains and be able to fight this particular strain.

 

When I say keep it at a manageable level I am referring to the bacteria.

 

-Wendy

 

Wendy,

thanks for sharing these thoughts. just to clarify,......

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

.......by IGG, you mean the Immunoglobulin? and by (AB), you mean antibodies?

 

 

 

and.....

 

Yes and eventually cross immunity occurs and they will 'hopefully' no longer require antibiotics. You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally. The IVIG and antibiotics help to get them there.

...Are the S.pryyogenes the problem? are they and antibodies one and the same? When you say "keep it at a level", ...is the "it" referring to antibodies or the bacteria?

 

Basically, who is the bad boy?

 

 

thanks,

Faith

[smartyjones]

You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally.

-Wendy

 

 

Wendy - please do keep us informed about the strain concept. i too believe this. my older son had strep with the only symptom being a face rash like teenage whitehead acne that dissipated but didn't go away for 2 days when 4 years old. my younger, pandas son, got the same strep, then 22 months, with the only symptom being vomiting. we would have never strep tested him if his brother hadn't been positive the day before. i do think that was the initial strep incident and pandas behaviors came out full-force 2.5 years later with another strep or that he never really cleared that first one. i do believe it's got to be something with that strain of strep.

 

we are using a homeopathic protocol from a german company called pleo sanum that has much of it's basis in that exact concept - that viruses, bugs, bacteria are/become part of your make-up and the goal is not so much to fully eradicate it but rather move it around and/or enhance your other body make-up to exist symbiotically with it as part of your bacterial make-up. i have to admit - even though i don't have a scientific mind - it makes the most sense to me with the strep carrier concept!

[momto2pandas]

One thing that I'm not getting from this explanation, though - if it's purely infectious, then why isn't PANDAS more common, and why isn't it always reported in clusters? The assumption must be that there must be some genetic or environmental predisposition involved, no? Although the immune system may not be completely mature until early childhood, even toddlers and young babies generally DO produce immune responses. So it seems that in order for this cascade of events to occur as described, there must be some individual immune failure, not just due to age, to start with. Could be a genetic "flaw" in immunity, or perhaps an overtaxed immune system, premature birth, medication administration....?

 

 

 

 

 

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

[melanie]

One thing that I'm not getting from this explanation, though - if it's purely infectious, then why isn't PANDAS more common, and why isn't it always reported in clusters? The assumption must be that there must be some genetic or environmental predisposition involved, no? Although the immune system may not be completely mature until early childhood, even toddlers and young babies generally DO produce immune responses. So it seems that in order for this cascade of events to occur as described, there must be some individual immune failure, not just due to age, to start with. Could be a genetic "flaw" in immunity, or perhaps an overtaxed immune system, premature birth, medication administration....?

 

 

 

 

 

I'm reposting this under a new topic. I feel its very important to understanding a potential cause and advocating on your child's behalf.

 

My father-in-law is a Urologist, while visiting for the holidays and discussing PANDAs he had the opportunity to read the following articles. He summarizes he thoughts on all three articles below.

 

 

Can this be why danny 1st iv didnt last very long?And the fact that he wasnt on antibiotics during the ivig?

Melanie

--------------

 

 

1. Probable role of Streptococcus Pyogenes in Kawasaki Disease http://www.springerlink.com/content/l34qj830548q4q46/ (you have already read this article)

 

2. Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

 

3. Antibody-Mediated Neuronal Cell Signaling in Behavior and Movement Disorders http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

 

--------------

 

 

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody due to AGE/state of immune system at time of exposure. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates. This humoral response to the exposure to strep pyogenes is because it secretes protease enzymes that destroys antibodies measured by an ASO titers or Igg level.

 

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea). Hence no raised titers unless additional exposures to more traditional strep strains occur.

 

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

 

--------------

 

THE HIGHER DOSE OF Antibiotics works because there is an underlying infection still within host!!!!!!!!!!! Relapses after PEX are because the bacteria was not fully eradicated. IVIG and antibiotics work because you overwhelm the bacteria. Some kids will need more than one treatment to recover and jump start their own immune system.

 

 

-Wendy

[sf_mom]

In our case it is a cluster.... perhaps you don't know the history. Five kids at a playdate in 2007, one child had RF, 3 are now PANDAS, with the 4th showing symptoms but not yet tested. Only female at playdate did not get sick but will be tested. S pyogenes favors males to female 4 to 1. Our older son with a more intact immune system at time (3 3/4 years old), got sick, got better but had a delayed response similiar to SC six months post when he had another strep infection and first TIC. Our 6 month old son was hospitalized at time for 6 days and treated with IVIG on day 5 of high fever (probably saved his life). No family history of OCD, Tourette's or auto-immune. My boys are only half genetically related via father.

 

BUT, I don't think we are ruling out the potential of genetic 'flaw' or over taxed immune system. This COULD most definitely add to the series of events, etc.

 

Also from a prior post...... a very large 'cluster' of people, I read another study that puts the rate as high as 13.8% in Native Hawaiian's.... I'm going to go find the link. They attribute most of it to over crowding conditions in home and RF.

 

http://qcbr.jabsom.hawaii.edu/QCBR/Turnerp...APedAd_2003.pdf

 

 

-Wendy

[Alex]

-Wendy,

 

Great information. Thank you so much. I have been spending the evening trying to digest it all. One of the biggest questions for all of us who have children with PANDAS is why antibiotics? I have read on this forum about parent after parent being unable to get antibioitcs for their PANDAS kids becasue they haven't been able to give a defintive reason for them. This very topic has been a friendship ender between some physician friends skeptical of PANDAS and my wife and I because we haven't been able to explain to them why my son needs to be on antibioitcs if he is not culturing positive for strep.

 

I am having a hard time seeing how the three studies together show that the strep is still present? I gathered that in children with Kawasaki disease there was an early expsosure to strep that the immune system was unprepared to handle properly setting them up for future improper immune responses to strep, that strep toxins can destroy ImmunoGlobulins and that improper immune response to strep is responsible for PANDAS. How does this show that the strep is still present? Is it because many kids with PANDAS have low IG levels showing that the IG is being destroyed by strep? Or does the Kawasaki study show that those kids have detectable strep toxins long after the fever part of the illness has ended. I honestly don't get it.

 

As far as the antibiotics goes, the common explanation I have heard on this forum is that their benefit to PANDAS kids comes from their immune modulating and anti-inflammatory properties. That explanation has never been very satisfying to me. In my son's case we know for a fact that his most recent and by far most severe PANDAS episode was casued by a strep infection that went entirely untreated(negative rapid strep so no antibiotics from pediatrician even though had all the clinical symptoms, ASO titer through the roof 6 weeks later when son going off the deep end). If GABHS has the ability to go deep into the body then my son most certainly still has it. We also know that without constant antibiotics his symptoms become incapacitating.

 

When my son left the hospital after PEX, his ASO titer was 30. Seven weeks later when his PANDAS was returning, his ASO was back in the high 200's. I have believed all along that he still had strep and that it was what was casuing the ASO to come back up.

 

I would love to be able to make a clear case to those who will listen that kids with PANDAS have an ongoing battle with strep if that is the case. Wendy, if you, or Buster or someone can make it more clear to a simpleton like me I would appreciate it.

 

Alex

[Worried_Dad]

I'm with you, Alex! For our son, 3 rounds of IVIG were just "temp fixes" without the mega-dose abx to keep the strep on the run. We, too, had always suspected that strep continued to harbor somewhere in our son and that normal abx prophylaxis was useless. Beth Maloney told me that she (and Sammy's doctors) believed this to be the case with Sammy as well.

 

It seems to a "medical layman" to be the simplest, most intuitive explanation for why the longer duration of higher-dose abx reduce symptoms in so many PANDAS kids. But I freely admit that the scientific nuances are beyond me.

 

BTW: an early MRI showed that our son had a sinus infection, and he complained throughout his PANDAS illness of constant congestion and drainage. Strep is a common cause of sinusitis, as I understand it. Coincidence?

 

Hard to know for sure, I realize.

 

 

-Wendy,

 

Great information. Thank you so much. I have been spending the evening trying to digest it all. One of the biggest questions for all of us who have children with PANDAS is why antibiotics? I have read on this forum about parent after parent being unable to get antibioitcs for their PANDAS kids becasue they haven't been able to give a defintive reason for them. This very topic has been a friendship ender between some physician friends skeptical of PANDAS and my wife and I because we haven't been able to explain to them why my son needs to be on antibioitcs if he is not culturing positive for strep.

 

I am having a hard time seeing how the three studies together show that the strep is still present? I gathered that in children with Kawasaki disease there was an early expsosure to strep that the immune system was unprepared to handle properly setting them up for future improper immune responses to strep, that strep toxins can destroy ImmunoGlobulins and that improper immune response to strep is responsible for PANDAS. How does this show that the strep is still present? Is it because many kids with PANDAS have low IG levels showing that the IG is being destroyed by strep? Or does the Kawasaki study show that those kids have detectable strep toxins long after the fever part of the illness has ended. I honestly don't get it.

 

As far as the antibiotics goes, the common explanation I have heard on this forum is that their benefit to PANDAS kids comes from their immune modulating and anti-inflammatory properties. That explanation has never been very satisfying to me. In my son's case we know for a fact that his most recent and by far most severe PANDAS episode was casued by a strep infection that went entirely untreated(negative rapid strep so no antibiotics from pediatrician even though had all the clinical symptoms, ASO titer through the roof 6 weeks later when son going off the deep end). If GABHS has the ability to go deep into the body then my son most certainly still has it. We also know that without constant antibiotics his symptoms become incapacitating.

 

When my son left the hospital after PEX, his ASO titer was 30. Seven weeks later when his PANDAS was returning, his ASO was back in the high 200's. I have believed all along that he still had strep and that it was what was casuing the ASO to come back up.

 

I would love to be able to make a clear case to those who will listen that kids with PANDAS have an ongoing battle with strep if that is the case. Wendy, if you, or Buster or someone can make it more clear to a simpleton like me I would appreciate it.

 

Alex

[sf_mom]

My father-in-law explained it like there is reservoir of strep somewhere in the child and you may never find out where. He also said, everyone has S. Pyogenes present 'some what' in their body but its kept at a manageable level by cross immunity to other strains of strep. If you read article 'Effects of SpeB and EndoS from S Pyogenes' it specifically says how the S Pyogenes does NOT have a humoral response so very different than other strains. In Kawasaki's they found the exotoxin of the S Pyogenes in the blood. The exotoxin can make you just as sick as the bacteria. Dr. Ed Kaplan (confirmed) and Buster (continues to post) how strep can go intercellular.... so its potentially 'global' throughout the child.

 

Our son too, responds to the high dose antibiotic in conjunction with the IVIG. After the first round IVIG we had him on the higher dose antibiotic 500 m.g. Azithromycin (he is 45 pounds) due to his brother/sister both having the flu several times and both times we upped his antibiotic the TICs disappeared within 48 hours. Once we would lower the dose the TICS would similarly reappear. Post his second IVIG, November 18th, 19th we kept him at 250 m.g. until about a week ago... At 250 m.g. he had flairs of TICS and intrusive thoughts that 'he couldn't turn off'. Once again, on the higher dose he is about 98% recovered.

 

In my father-in-laws opinion, all three treatment methods should work CORRECT dose and RIGHT antibiotic (might take a LONG time to get ahead of bacteria but they eventually will), IVIG in conjunction with the CORRECT dose and RIGHT antibiotic (much faster recovery because they get ahead of bacteria quicker), PEX has an immediate response because the antibody replacement or blood exchange but should be followed up with CORRECT dose and RIGHT antibiotic to get ahead of bacteria or IVIG/antibiotics following.

 

For now, I have confirmed that with Dr. K and father-in-law that our son is on the higher dose and we will continue that and IVIG until this THING 'bacteria' burns itself out and is at a manageable level for him to remain 98% better. Our hope is to eventually lower the antibiotic dose as his body rebounds.

 

I would recommend if you are having difficulties with a specific Dr., bring his summary and the three articles posted and hopefully the 'alarm' bells will go off. I've provided the same information to Dr. K and Dr. Kaplan for their review.

 

 

-Wendy