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"Tourette Outbreak" in Leroy, NY


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Well, my non- PANDAS dd "carried" the same (well I assume it was the same, nobody offered to do strain analysis for us) strain that was extremely virulent ( PANDAS wise) for my PANDAS dd (who initially had a fever but the aside from PANDAS was also an symptomatic carrier). My kids then transmitted this strep to a friend (sleepover) who got traditional (sore throat/fever) strep symptoms. So, I from my experience, I wouldn't say that "carried" strains are weak or non virulent
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I don't know if or how this might fit into your girls situation EAMom, but I was looking for something else and happened to see a remark in a paper on autoimmunity that said something about the failure to clear a pathogen not being the sign of a weak immune system but rather a tolerance. I didn't think much about it but it stuck in the back of my mind. When I was thinking about the N Acetylglucosamine being the target of autoantibodies, it made me wonder if that was why my one son never cleared after multiple rounds of antibiotics. He was also asymptomatic many times with positive cultures and was said to be a carrier. I don't claim PANDAS or PANS due mainly to the lack of sudden onset and I don't believe as severe as many children but have always felt there was overlap.

I do wonder if stains that lack M protein could sit there untouched by the immune system because of a tolerance that would prevent harm.

 

This is what I read regarding strains lacking M protein. The cite is Cunningham

 

http://emedicine.medscape.com/article/971097-overview#a0104

 

The ability of group A streptococci to initiate disease is highly depends on M protein.[1] Strains lacking M protein are essentially nonpathogenic. Interestingly, streptococci isolated from chronic pharyngeal carriers (individuals asymptomatically colonized with S pyogenes) contain little or no M protein and are also relatively avirulent.

 

Well, it says relatively avirulent so who knows.

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Well, my non- PANDAS dd "carried" the same (well I assume it was the same, nobody offered to do strain analysis for us) strain that was extremely virulent ( PANDAS wise) for my PANDAS dd (who initially had a fever but the aside from PANDAS was also an symptomatic carrier). My kids then transmitted this strep to a friend (sleepover) who got traditional (sore throat/fever) strep symptoms. So, I from my experience, I wouldn't say that "carried" strains are weak or non virulent
.

 

I don't know if or how this might fit into your girls situation EAMom, but I was looking for something else and happened to see a remark in a paper on autoimmunity that said something about the failure to clear a pathogen not being the sign of a weak immune system but rather a tolerance. I didn't think much about it but it stuck in the back of my mind. When I was thinking about the N Acetylglucosamine being the target of autoantibodies, it made me wonder if that was why my one son never cleared after multiple rounds of antibiotics. He was also asymptomatic many times with positive cultures and was said to be a carrier. I don't claim PANDAS or PANS due mainly to the lack of sudden onset and I don't believe as severe as many children but have always felt there was overlap.

I do wonder if stains that lack M protein could sit there untouched by the immune system because of a tolerance that would prevent harm.

 

This is what I read regarding strains lacking M protein. The cite is Cunningham

 

http://emedicine.medscape.com/article/971097-overview#a0104

 

The ability of group A streptococci to initiate disease is highly depends on M protein.[1] Strains lacking M protein are essentially nonpathogenic. Interestingly, streptococci isolated from chronic pharyngeal carriers (individuals asymptomatically colonized with S pyogenes) contain little or no M protein and are also relatively avirulent.

 

Well, it says relatively avirulent so who knows.

 

I just don't know Kim...so much is presumed (by certain members of the medical community) about the carrier state (that it is benign, that carriers have chronically elevated titers, or that they don't get elevated titers). And then you have my situation where (presumably) the same strain caused:

1) no symptoms in 1 child (no pharyngitis, no PANDAS)

2) severe PANDAS in another (the sibling) w/out pharyngitis

3) "regular" strep symptoms (with pharyngitis) in a 3rd --infected friend after a sleepover with children 1 and 2

 

and unfortunately, nobody is actually going around doing strain analysis on PANDAS kids with strep (don't know if the NIMH study is doing anything like that?)...that is something that would be really interesting to me, if there are certain strains causing these problems. And maybe there are some strains that are more benign in EVERYONE. But from what I see, just b/c strep is b-9 in 1 child, doesn't mean it will be in another. I don't even know about the M protein. Maybe there are other proteins that play a role, that we haven't identified.

 

I have to tell you, dh did spend a couple of hours (on the phone) with Ed Kaplan (WHO strep expert) a few years ago talking about strep. Lots of that information got translated into the helpful threads by Buster. But what came out of it, is that the carrier state is an enigma, and that Dr. Kaplan doesn't believe it is neccessarily as benign as once thought. There were lots of questions dh had, and not a lot of answers. Dr. Kaplan was very forthright, a lot of this stuff just hasn't been studied. There is just so much that isn't known.

 

PS--from an earlier question. My dd was ANA neg.

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I just don't know Kim...so much is presumed (by certain members of the medical community) about the carrier state (that it is benign, that carriers have chronically elevated titers, or that they don't get elevated titers). And then you have my situation where (presumably) the same strain caused:

1) no symptoms in 1 child (no pharyngitis, no PANDAS)

2) severe PANDAS in another (the sibling) w/out pharyngitis

3) "regular" strep symptoms (with pharyngitis) in a 3rd --infected friend after a sleepover with children 1 and 2

 

and unfortunately, nobody is actually going around doing strain analysis on PANDAS kids with strep (don't know if the NIMH study is doing anything like that?)...that is something that would be really interesting to me, if there are certain strains causing these problems. And maybe there are some strains that are more benign in EVERYONE. But from what I see, just b/c strep is b-9 in 1 child, doesn't mean it will be in another. I don't even know about the M protein. Maybe there are other proteins that play a role, that we haven't identified.

 

I have to tell you, dh did spend a couple of hours (on the phone) with Ed Kaplan (WHO strep expert) a few years ago talking about strep. Lots of that information got translated into the helpful threads by Buster. But what came out of it, is that the carrier state is an enigma, and that Dr. Kaplan doesn't believe it is neccessarily as benign as once thought. There were lots of questions dh had, and not a lot of answers. Dr. Kaplan was very forthright, a lot of this stuff just hasn't been studied. There is just so much that isn't known.

 

PS--from an earlier question. My dd was ANA neg.

That lack of research and pure speculation on the part of practitioners has frustrated many attempts to get my "carrier" child help. Possibly the strep was (is) just a red herring and we've assumed it was the source of the problems, without checking for other sources...IDK. But, I do know that we had several specialists informing the pediatrician that it was just carriage and need not be treated. TG the ped believed his own eyes, having witnessed horrendous behavioral outbursts that improved w/ abx.

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I just don't know Kim...so much is presumed (by certain members of the medical community) about the carrier state (that it is benign, that carriers have chronically elevated titers, or that they don't get elevated titers). And then you have my situation where (presumably) the same strain caused:

1) no symptoms in 1 child (no pharyngitis, no PANDAS)

2) severe PANDAS in another (the sibling) w/out pharyngitis

3) "regular" strep symptoms (with pharyngitis) in a 3rd --infected friend after a sleepover with children 1 and 2

 

and unfortunately, nobody is actually going around doing strain analysis on PANDAS kids with strep (don't know if the NIMH study is doing anything like that?)...that is something that would be really interesting to me, if there are certain strains causing these problems. And maybe there are some strains that are more benign in EVERYONE. But from what I see, just b/c strep is b-9 in 1 child, doesn't mean it will be in another. I don't even know about the M protein. Maybe there are other proteins that play a role, that we haven't identified.

 

I have to tell you, dh did spend a couple of hours (on the phone) with Ed Kaplan (WHO strep expert) a few years ago talking about strep. Lots of that information got translated into the helpful threads by Buster. But what came out of it, is that the carrier state is an enigma, and that Dr. Kaplan doesn't believe it is neccessarily as benign as once thought. There were lots of questions dh had, and not a lot of answers. Dr. Kaplan was very forthright, a lot of this stuff just hasn't been studied. There is just so much that isn't known.

 

PS--from an earlier question. My dd was ANA neg.

That lack of research and pure speculation on the part of practitioners has frustrated many attempts to get my "carrier" child help. Possibly the strep was (is) just a red herring and we've assumed it was the source of the problems, without checking for other sources...IDK. But, I do know that we had several specialists informing the pediatrician that it was just carriage and need not be treated. TG the ped believed his own eyes, having witnessed horrendous behavioral outbursts that improved w/ abx.

 

Yup...totally agree with you Peg. Dr. Kaplan said he would have called my PANDAS dd a "carrier" (I think b/c she didn't clear strep on her own after 2 mo.?)...so all these assumptions docs make about "carriers" not needing antibiotics, or "carriers" not getting PANDAS, or "carriers" not being contagious, or "carriers" having chronically elevated titers, or "carriers" not having an immune response....well, it just makes me batty.

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I just don't know Kim...so much is presumed (by certain members of the medical community) about the carrier state (that it is benign, that carriers have chronically elevated titers, or that they don't get elevated titers). And then you have my situation where (presumably) the same strain caused:

1) no symptoms in 1 child (no pharyngitis, no PANDAS)

2) severe PANDAS in another (the sibling) w/out pharyngitis

3) "regular" strep symptoms (with pharyngitis) in a 3rd --infected friend after a sleepover with children 1 and 2

 

and unfortunately, nobody is actually going around doing strain analysis on PANDAS kids with strep (don't know if the NIMH study is doing anything like that?)...that is something that would be really interesting to me, if there are certain strains causing these problems. And maybe there are some strains that are more benign in EVERYONE. But from what I see, just b/c strep is b-9 in 1 child, doesn't mean it will be in another. I don't even know about the M protein. Maybe there are other proteins that play a role, that we haven't identified.

 

I have to tell you, dh did spend a couple of hours (on the phone) with Ed Kaplan (WHO strep expert) a few years ago talking about strep. Lots of that information got translated into the helpful threads by Buster. But what came out of it, is that the carrier state is an enigma, and that Dr. Kaplan doesn't believe it is neccessarily as benign as once thought. There were lots of questions dh had, and not a lot of answers. Dr. Kaplan was very forthright, a lot of this stuff just hasn't been studied. There is just so much that isn't known.

 

PS--from an earlier question. My dd was ANA neg.

That lack of research and pure speculation on the part of practitioners has frustrated many attempts to get my "carrier" child help. Possibly the strep was (is) just a red herring and we've assumed it was the source of the problems, without checking for other sources...IDK. But, I do know that we had several specialists informing the pediatrician that it was just carriage and need not be treated. TG the ped believed his own eyes, having witnessed horrendous behavioral outbursts that improved w/ abx.

 

Yup...totally agree with you Peg. Dr. Kaplan said he would have called my PANDAS dd a "carrier" (I think b/c she didn't clear strep on her own after 2 mo.?)...so all these assumptions docs make about "carriers" not needing antibiotics, or "carriers" not getting PANDAS, or "carriers" not being contagious, or "carriers" having chronically elevated titers, or "carriers" not having an immune response....well, it just makes me batty.

And if we disagree, they demand scientific proof (not our anecdotal real experience), even though their "truth" is based on even less evidence than ours.

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