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Posted

So, I met with Diana Polhman yesterday for the first time. We live only a couple of miles apart and she has been helping me tremendously with my son. As most of you know, she met with Dr. Cunningham (STREP EXPERT) last week. It appears and hopefully I'm getting this right..... Dr. Cunningham believes it to be the type of strep. Not typical Streptococcus A but S. pneumoniae which is very difficult to rid the body of infection. Please read the definition below closely. If it is, it would explain why certain antibiotics are not that effective and why repeated IVIG is sometimes required.

 

My child had NEVER been sick until he was exposed to what we now to believe was Scarlet Fever. The first time my son was ever prescribed antibiotics was at 4 1/2...... so, only one year ago. He was healthy, healthy, healthy.

 

What are your thoughts? I hope to have my son tested for S. pneumoniae if possible. I understand its difficult to find someone to test. Plus he is now post IVIG.

 

Taken from Wikipedia

 

Streptococcus pneumoniae, or pneumococcus, is Gram-positive, alpha-hemolytic, bile soluble diplococcus aerotolerant anaerobe and a member of the genus Streptococcus.[1] A significant human pathogenic bacterium, S. pneumoniae was recognized as a major cause of pneumonia in the late 19th century and is the subject of many humoral immunity studies.

Despite the name, the organism causes many types of pneumococcal infection other than pneumonia, including acute sinusitis, otitis media, meningitis, bacteremia, sepsis, osteomyelitis, septic arthritis, endocarditis, peritonitis, pericarditis, cellulitis, and brain abscess.

 

S. pneumoniae is the most common cause of bacterial meningitis in adults and children, and is one of the top two isolates found in ear infection, otitis media.[2] Pneumococcal pneumonia is more common in the very young and the very old.

 

S. pneumoniae can be differentiated from other members of Viridans Streptococci, some of which are also alpha hemolytic, using an optochin test, as S. pneumoniae is optochin sensitive. S. pneumoniae can also be distinguished based on its sensitivity to lysis by bile. The encapsulated, gram-positive coccoid bacteria have a distinctive morphology on gram stain, the so-called, "lancet shape." It has a polysaccharide capsule that acts as a virulence factor for the organism; more than 90 different serotypes are known, and these types differ in virulence, prevalence, and extent of drug resistance.

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Posted

SF mom- Can you clarify what you are saying? Are you saying our kids are (or were) sick with streptococcus pneumonae, and that is what caused pandas? Is this what Dr C means? This would of course be related to the immune issues many are having....

Posted

So, Dr. C doesn't necessarily think that Strep A or Strep throat is the only bug that can cause Pandas-correct?

 

If she is thinking more along the lines of Strep Pneumonae does she also think that many of these kids do indeed have an immune deficiency that is causing their lack of reaction to the strep pneumonae (failed antibody response)?

Posted

Whoa, this is interesting and important to understand for us since we are somehow all wrapped up in these test results. How do you test for whether or not you have had or still have it especially if you have low immune response to the titer test?

 

Susan

Posted

That is my understanding.... but I did not talk with her directly only to Diana. I did e-mail Dr. Cunningham yesterday to ask her more directly and see how me might go about getting tested for the specific strains of strep.

 

It makes sense though: potentially failed the STREP PNEUMOCOCCAL ANTIBODY TITER by many kids, ongoing infections that are hard to eradicate, sometimes odd titer responses, etc.

Posted

I believe Dr. K told our ped to have us tested for this over the summer. We did not have this condition. I just finally got a copy of all of our bloodwork yesterday and will look through it all and let everyone know. But I am almost positive that we did this test and it was negative. But we also failed the strep titers too. So far, ALL of our blood work is normal. THis is becoming a problem because we have ZERO tests that show anything abnormal.

Posted
I believe Dr. K told our ped to have us tested for this over the summer. We did not have this condition. I just finally got a copy of all of our bloodwork yesterday and will look through it all and let everyone know. But I am almost positive that we did this test and it was negative. But we also failed the strep titers too. So far, ALL of our blood work is normal. THis is becoming a problem because we have ZERO tests that show anything abnormal.

 

In order for her to "pass" the strep pneumonae/pneumococcal titers test-she has to make a response to the various serotypes. So, if you see numbers like <0.3 it means that she did not make a response to that titer. You are looking for numbers above 2 to show that she made the response.

Posted

From my understanding its fairly difficult to be tested for S. pneumoniae and the hospital would 'most likely' need to be associated with a university to have proper testing equipment. Again, I've got an e-mail into Dr. Cunningham to figure out how we might be able to be tested.

 

Perhaps you are thinking of the STREP PNEUMOCOCCAL ANTIBODY TITER test. This is not looking for the actual bacteria but more of the response the body produces to the pneumococcal hence 'antibody titers'.

Posted

Ok, I am confused,. We had a test done for Mycoplasma Pneumoniae IgG and IgM. We did this at the time of our MRI per Dr. K's request. He said that if we had this it would be bad. Our results were <=.90. The paperwork I have in front of me says that <=.90 for Mycoplasma Pneumonia IgG is Negative.

 

Is this different than what you are saying SF Mom?

Posted
Ok, I am confused,. We had a test done for Mycoplasma Pneumoniae IgG and IgM. We did this at the time of our MRI per Dr. K's request. He said that if we had this it would be bad. Our results were <=.90. The paperwork I have in front of me says that <=.90 for Mycoplasma Pneumonia IgG is Negative.

 

Is this different than what you are saying SF Mom?

 

I'm not sure. I do know STREP PNEUMOCOCCAL ANTIBODY TITER tests 14 serotypes and any response less than 1.5/2.0 means they don't produce the antibodies to fight off the Pneumonia. Did you ever get any clarity from Dr. K on the test results?

 

-Wendy

Posted

Well, I can tell you that it was group A strep for my kids that did it....they tested positive on rapid swab...that test is specific for group A strep.

Posted
Well, I can tell you that it was group A strep for my kids that did it....they tested positive on rapid swab...that test is specific for group A strep.

 

AND, so did my son's friend who scores 147 for pandas. He had a very difficult time getting his swollen gland to subside and abating strep with several courses of different antibiotics. Almost a year later they pulled adnoids and he got a little better. Its only been in the past year he has difficulty with behavioral issues and was held back in kindergarten as a result.

 

Perhaps another form of strep in conjunction with group A. I don't know the answer but it does seem the Streptococcus Pneumonae is much more resilient. AND, I find it odd that my son had never been sick prior too them both getting sick at the same time and they are both PANDAS.

Posted
Ok, I am confused,. We had a test done for Mycoplasma Pneumoniae IgG and IgM. We did this at the time of our MRI per Dr. K's request. He said that if we had this it would be bad. Our results were <=.90. The paperwork I have in front of me says that <=.90 for Mycoplasma Pneumonia IgG is Negative.

 

Is this different than what you are saying SF Mom?

 

I'm not sure. I do know STREP PNEUMOCOCCAL ANTIBODY TITER tests 14 serotypes and any response less than 1.5/2.0 means they don't produce the antibodies to fight off the Pneumonia. Did you ever get any clarity from Dr. K on the test results?

 

-Wendy

 

Yes-that is something completely different than the Streptococcus Pneumonae titers test.

Mycoplasma pneumonia is a type of atypical pneumonia. It is caused by the bacteria M. pneumoniae. This type of pneumonia usually affects people younger than 40. Various studies suggest that it makes up 15-50% of all pneumonia cases in adults and an even more in school-aged children.

 

Wendy-Do you know if the ASO titers relate only to Group A strep or does it show an increase for any type of strep??

Posted

SF Mom, what is the link with Scarlett Fever? It is strange that you say that because the same is true for DD on this end. Our youngest daughter was diagnosed with Scarlett Fever and then boom the PANDAS daughter developed PANDAS. But, we never tried abx until 5 months later because she was totally asymptomatic .

Posted
SF Mom, what is the link with Scarlett Fever? It is strange that you say that because the same is true for DD on this end. Our youngest daughter was diagnosed with Scarlett Fever and then boom the PANDAS daughter developed PANDAS. But, we never tried abx until 5 months later because she was totally asymptomatic .

 

 

Dr. K seems to think my son's friend had Scarlet Fever due to peeling palms and feet at the time when all of our kids got sick but my son's friend was never treated for anything other than a resilient strep. The friend tested positive for strep the next day after playdate. My youngest was treated with IVIG five days into his high fever and my PANDAS son was not treated for anything at the time (but was sick). As you know, Scarlet Fever is strep. He then got sick again 6 months later and had that first TIC/Cough that we couldn't get rid of.

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