thoughts on what to do

[dcmom]

I am not questioning these theories, just trying to understand. I, of course, am all for immune testing to help with discovering possible underlying issues, and/or to help with insurance payment. I am just trying to understand the medical implications. So my question is, do we know if there is a relationship to failed pneumococcal titers, and an inability to fight GABHS? I understand there would be an inability to fight strep pneumonai- but that is different, correct?

 

Are you thinking that your kids had strep pneumonai as a trigger for pandas, and not GABHS?

 

PS: My dh just rec'd the rest of my daughter's immune results, so far everything looks normal- but he can't find pneumococcal titers! Are they called something else? Don't tell me this is the one test they didn't run! Can you tell me if they said pneumococcal titers on the report? He is going to fax it to me shortly...

 

Thanks

[peglem]

We live in northern Nevada. I was considering a phone consult with Dr. Latimer. Does she do that? Is the immune testing to get IVIG paid for? Is that all that it is good for? Can they actually help immune issues? We did do 5 weeks Azith prior to IVIG that did not help. Considering steroid burst if things continue. I just worry as it sometimes seems to make tics worse and I just want to "Do no harm!" At over $10,000 cost for IVIG, we do not take it lightly. But of course would do it again if needed. I would just love to know for sure it would help.

I can't speak for anyone else, but we did immune testing to try to qualify for IVIG through insurance. IVIG is a treatment for immune deficiencies-to provide the body with the missing or deficient IgG. There is NO WAY we can afford IVIG out of pocket. I don't know if Dr. Latimer does phone consults with patients, but my daughter's pediatrician called her (on the advice of Dr. Cunningham who he also called), and she returned his call, same day and consulted with him. I prefer that to my going to a doctor and saying, "this neurologist in Virginia says..."

[sf_mom]

Why couldn't there be a reaction to the strep pneumonai as well as GABHS as a trigger. Cunningham's test only measures the protein CaM Kinase that is elevated due to a streptococcal bacteria.... I'm almost certain the test isn't related to just GABHS. You know originally, my son was exposed to Scarlet Fever... he had never really been sick prior, had his first TIC six months later similar to Sydenham Chorea delayed response. He was is also reactive to GABHS. I don't think anybody knows the answer yet. BUT, I find it odd my son's friend who had the Scarlet Fever at the time of playdate and my son are both now PANDAs, both have STREP PNEUMOCOCCAL ANTIBODY TITER deficiencies.... specifically my son failed 10 of 14 and Adrian failed 12 of 14 and they are NOT genetically related. Our other son, who also got sick was treated 5 days into high fever with IVIG and appears to be fine. Our daughter, never got sick.... S. pneumonai favors males to females (not sure why).

 

-Wendy

 

I am not questioning these theories, just trying to understand. I, of course, am all for immune testing to help with discovering possible underlying issues, and/or to help with insurance payment. I am just trying to understand the medical implications. So my question is, do we know if there is a relationship to failed pneumococcal titers, and an inability to fight GABHS? I understand there would be an inability to fight strep pneumonai- but that is different, correct?

 

Are you thinking that your kids had strep pneumonai as a trigger for pandas, and not GABHS?

 

PS: My dh just rec'd the rest of my daughter's immune results, so far everything looks normal- but he can't find pneumococcal titers! Are they called something else? Don't tell me this is the one test they didn't run! Can you tell me if they said pneumococcal titers on the report? He is going to fax it to me shortly...

 

Thanks

[sf_mom]

SF MOM:

Wouldn't it be obvious that if they have no antibodies that a child would have no ability to fight off future infection and what little they have misfire, i.e why donor antibodies are required 'IVIG' and why some are being classified with PIDD and receiving monthly IVIG. Again, certain strains of strep are resistant to certain types of antibiotics. Based on conversations I've had with Diana and who visited Madeleine, in a petri dish Penicillin has been known to just rolls right off certain strains of strep. Specifically, the coccoid bacteria has a capsule surrounding it which is difficult to eradicate as a result. AND, as Buster stated in his post "But the point is that antibiotics just slow down an infection and rely on the immune system to mount enough macrophages to surround and destroy invaders or take out infected cells". Again why donor antibodies are often required.

 

But, if they have PANDAS, they HAVE to be making antibodies to at least some strep antigens or there would be no antibodies to cross react with the basal ganglia cells. My daughter has chronic strep and has some IgA and IgG subclass deficiencies, yet she passed the pneumoccus titers test (she responded after 2 vaccines) So, her body is able to mount an immune response to that, and yet can not clear itself of GABHS, and yet shows an immune response to GABHS (if the Cunninham tests are any indication. I just think there is not enough known about the relationship of the pneumoccal titer response to GABHS to make any definitive judgements. But, if failing that test gets you the treatment your child needs to recover from PANDAS...YEA!

 

 

I concur.

[ShaesMom]

I am not questioning these theories, just trying to understand. I, of course, am all for immune testing to help with discovering possible underlying issues, and/or to help with insurance payment. I am just trying to understand the medical implications. So my question is, do we know if there is a relationship to failed pneumococcal titers, and an inability to fight GABHS? I understand there would be an inability to fight strep pneumonai- but that is different, correct?

 

Are you thinking that your kids had strep pneumonai as a trigger for pandas, and not GABHS?

 

PS: My dh just rec'd the rest of my daughter's immune results, so far everything looks normal- but he can't find pneumococcal titers! Are they called something else? Don't tell me this is the one test they didn't run! Can you tell me if they said pneumococcal titers on the report? He is going to fax it to me shortly...

 

Thanks

 

Our labwork came back with the name Streptococcus Pneumonae IGG instead of Pneumococcal Titers. The lab work would show a list of 14 different serotypes with a numerical value for each. It does not give a reference range EXCEPT in the long paragraph that follows.

[dcmom]

Well- the lab (for some reason) changed the test from strep pneumonae titers to mycoplasma pneumonae (negative)! Everything else is perfect- all Igg, Igm, Iga, subclasses, tetanus, and many other numbers.

 

I am hoping I can get them to draw blood for the strep pneumonae test at the hospital when we are there for pex. I imagine the pex won't affect those results.

 

Shaes mom- do you have any info or studies that talk about low or failing strep pneum. titers in regard to immune problems? I am wondering what Dr Latimer thinks of this, and might like to head prepared with some type of paperwork.

 

At the bottom of the report, someone noted "seems to have well functioning B cells". This is totally lost on me- anyone?

 

thanks...

 

Eileen

[peglem]

Well- the lab (for some reason) changed the test from strep pneumonae titers to mycoplasma pneumonae (negative)! Everything else is perfect- all Igg, Igm, Iga, subclasses, tetanus, and many other numbers.

 

I am hoping I can get them to draw blood for the strep pneumonae test at the hospital when we are there for pex. I imagine the pex won't affect those results.

 

Shaes mom- do you have any info or studies that talk about low or failing strep pneum. titers in regard to immune problems? I am wondering what Dr Latimer thinks of this, and might like to head prepared with some type of paperwork.

 

At the bottom of the report, someone noted "seems to have well functioning B cells". This is totally lost on me- anyone?

 

thanks...

 

Eileen

 

I'm never quite sure if I have things figured out right but, as near as I can figure Bcells are like little antibody factories...once they find a target antigen, they assemble an antibody for it and churn out replicas.

[ShaesMom]

Well- the lab (for some reason) changed the test from strep pneumonae titers to mycoplasma pneumonae (negative)! Everything else is perfect- all Igg, Igm, Iga, subclasses, tetanus, and many other numbers.

 

I am hoping I can get them to draw blood for the strep pneumonae test at the hospital when we are there for pex. I imagine the pex won't affect those results.

 

Shaes mom- do you have any info or studies that talk about low or failing strep pneum. titers in regard to immune problems? I am wondering what Dr Latimer thinks of this, and might like to head prepared with some type of paperwork.

 

At the bottom of the report, someone noted "seems to have well functioning B cells". This is totally lost on me- anyone?

 

thanks...

 

Eileen

 

Eileen,

 

Here is a link to a "brief" explanation of the immune system and how it works. It relates to eosinophilic disease but it should answer your questions about B cells. I'll look and see what I have on the strep pneumo titers and get back with you.

 

http://www.cincinnatichildrens.org/svc/alp...mune-system.htm

 

Sam