ShaesMom Posted July 2, 2009 Report Share Posted July 2, 2009 Our immunologist ran a blood test called Pneumococcal Titers-14 strain. The lab results came back with the name Streptococcal Pneumonia Igg and a breakdown of the 14 different serotypes. Our dd came back with a normal result on only 2 of these. the remaining 12 were below the normal range. Yes, these refer to how she responds to strep and I believe other infections as well. He ran another test called T & B Cell Quantitation by Flow Cytometry. This came back showing a high % of CD3 T Cells and CD4 Helper Cells. Unfortunately, I don't know exactly what all the medical terms mean yet. But I do know that he felt it would be enough to get IVIG approved through insurance. In the past weeks we have tested her Igg, Igg subclasses, Iga & Igm. All of these results came back normal. OUr immuno told us that even though those numbers were within the normal range it didn't mean that her immune system was actually working properly. The above tests confirmed exactly that. He gave us a great analogy: If my daughter's immune system is the dog and the various virus' are the thief and her body is the house, when the thief enters the house the dogs wags his tail at the thief rather than attacking it. With her Pandas, when the dog sees the thief, instead of biting the thief he bites himself. Kind of corny but it was a great way to explain it my kids. So, in addition to Pandas, she has Common Variable Immune Deficiency or a Primary immunodeficiency Disease. She may be looking at IVIG every three to fours rather than a one time treatment for the Pandas. Not really the news we wanted because she is likely looking at a lifetime of illnesses and complications. Anyway, this increases our chances of getting insurance to approve IVIG which is a common treatment for CVID. We have another appt on the 13th and I'm hoping to get some more answers on what exactly this all means. I wanted to share this with everyone in the hope that it helps someone else find some answers for their children. Link to comment Share on other sites More sharing options...
ShaesMom Posted July 2, 2009 Author Report Share Posted July 2, 2009 That should be happy face not a grumpy one!!! LOL Link to comment Share on other sites More sharing options...
peglem Posted July 2, 2009 Report Share Posted July 2, 2009 Our immunologist ran a blood test called Pneumococcal Titers-14 strain. The lab results came back with the name Streptococcal Pneumonia Igg and a breakdown of the 14 different serotypes. Our dd came back with a normal result on only 2 of these. the remaining 12 were below the normal range. Yes, these refer to how she responds to strep and I believe other infections as well. He ran another test called T & B Cell Quantitation by Flow Cytometry. This came back showing a high % of CD3 T Cells and CD4 Helper Cells. Unfortunately, I don't know exactly what all the medical terms mean yet. But I do know that he felt it would be enough to get IVIG approved through insurance. In the past weeks we have tested her Igg, Igg subclasses, Iga & Igm. All of these results came back normal. OUr immuno told us that even though those numbers were within the normal range it didn't mean that her immune system was actually working properly. The above tests confirmed exactly that. He gave us a great analogy: If my daughter's immune system is the dog and the various virus' are the thief and her body is the house, when the thief enters the house the dogs wags his tail at the thief rather than attacking it. With her Pandas, when the dog sees the thief, instead of biting the thief he bites himself. Kind of corny but it was a great way to explain it my kids. So, in addition to Pandas, she has Common Variable Immune Deficiency or a Primary immunodeficiency Disease. She may be looking at IVIG every three to fours rather than a one time treatment for the Pandas. Not really the news we wanted because she is likely looking at a lifetime of illnesses and complications. Anyway, this increases our chances of getting insurance to approve IVIG which is a common treatment for CVID. We have another appt on the 13th and I'm hoping to get some more answers on what exactly this all means. I wanted to share this with everyone in the hope that it helps someone else find some answers for their children. We had immune testing done 2 or 3 years ago. the streptococcal pneumonia test (as it was explained to me anyway) does not measure immunity to strepA, but is a diagnostic test to check immune response. So the immunologist did a baseline test (low titers on all strains, but that could just mean the person has not been exposed to those). Then he vaxed her for those strains and pulled another titer test. She had a poor immune response, so he vaxed her again and the next test showed an adequate immune response...so he pronounced her "cured", claiming he got her immune system "jumpstarted" and said she should have fewer problems with the recurring strepA. It made no difference with her chronic strep A. @ 6 months later, her pediatrician sent her back to the immunologist, trying to get support for IVIG infusion and I made the immunologist call the pediatrician during our appointment (this was agreed upon in advance) so he could explain what we were looking for. The immunologist said he thought IVIG would not help because it would just be giving her the things she already has....so I struck out there. But, we really wanted to find out why my daughter's immune system was not getting rid of the strep and why she was seemingly not making antibodies to it either (low ASO and antiDnase + no immune reaction=inflammation or fever). We knew the strep was there and coming back rapidly after each course of Abx, so, why wasn't her immune system mounting a defense? We will be getting the Cunningham blood draw done on Monday, so that should give us more of an indication of what's going on. Link to comment Share on other sites More sharing options...
Suzan Posted July 3, 2009 Report Share Posted July 3, 2009 Our immunologist ran a blood test called Pneumococcal Titers-14 strain. The lab results came back with the name Streptococcal Pneumonia Igg and a breakdown of the 14 different serotypes. Our dd came back with a normal result on only 2 of these. the remaining 12 were below the normal range. Yes, these refer to how she responds to strep and I believe other infections as well. He ran another test called T & B Cell Quantitation by Flow Cytometry. This came back showing a high % of CD3 T Cells and CD4 Helper Cells. Unfortunately, I don't know exactly what all the medical terms mean yet. But I do know that he felt it would be enough to get IVIG approved through insurance. In the past weeks we have tested her Igg, Igg subclasses, Iga & Igm. All of these results came back normal. OUr immuno told us that even though those numbers were within the normal range it didn't mean that her immune system was actually working properly. The above tests confirmed exactly that. He gave us a great analogy: If my daughter's immune system is the dog and the various virus' are the thief and her body is the house, when the thief enters the house the dogs wags his tail at the thief rather than attacking it. With her Pandas, when the dog sees the thief, instead of biting the thief he bites himself. Kind of corny but it was a great way to explain it my kids. So, in addition to Pandas, she has Common Variable Immune Deficiency or a Primary immunodeficiency Disease. She may be looking at IVIG every three to fours rather than a one time treatment for the Pandas. Not really the news we wanted because she is likely looking at a lifetime of illnesses and complications. Anyway, this increases our chances of getting insurance to approve IVIG which is a common treatment for CVID. We have another appt on the 13th and I'm hoping to get some more answers on what exactly this all means. I wanted to share this with everyone in the hope that it helps someone else find some answers for their children. Wow, sorry about the additional condition, but that is great that you have her diagnosed. I am currently looking for an immuniologist to see if I can get some additional tests for my daughters who have never had an immune workup except for their Celiac test and Dr. Cunningham's test. What are your daughters symptoms that lead the immuinologist to think it might be CVID? That first test you mention sounds crucial for us! Big HUGS. Susan Link to comment Share on other sites More sharing options...
Buster Posted July 3, 2009 Report Share Posted July 3, 2009 Hi ShaesMom, Our dd had a similar results on the PREVNAR test. Our immunologist didn't feel the supressed PREVNAR was significant in and of itself so we did keep looking for other elements. In studying this, I did find the following paper that indicated that azithromycin did supress PREVNAR titer response in mice. http://www.journals.uchicago.edu/doi/pdf/10.1086/425038 So if your daughter is on long-term azithromycin, that could affect the PREVNAR titer tests; however, there doesn't seem to be a good study on people. So we've been keeping an eye on it and adding it to the list of unusual results. Our immunologist ran a blood test called Pneumococcal Titers-14 strain. The lab results came back with the name Streptococcal Pneumonia Igg and a breakdown of the 14 different serotypes. Our dd came back with a normal result on only 2 of these. the remaining 12 were below the normal range. Yes, these refer to how she responds to strep and I believe other infections as well. In terms of your other study, our dd had CD3 and CD4 percentages at the top of the range of normal while her CD8 percentage was at the bottom of normal. The CD8 is essentially the Cytotoxic response (i.e., T-cell suppressors). Whereas CD4 drives the helper cells (such as inflammatory Th2 response). As an interesting note, Azithromycin shifts Th2 response to Th1 essentially increasing the cytotoxic response and reducing the inflammatory Th2 response. Very interesting the similarity in what you found with our own situation. Thanks for posting. Buster Link to comment Share on other sites More sharing options...
ShaesMom Posted July 3, 2009 Author Report Share Posted July 3, 2009 I think he was just open minded about running the addt'l tests. Her Ped ran the tests for Igg, Igg subclasses, Igm & Iga at my request. I then took those results, which were all normal, with us when our dd had an appt with the allergist/immuno doc for her food allergy. I also gave him some info on Pandas and a short history of all her illnesses since she was two. During the course of our conversation, I told him that she seems to be sick more often than not and that she seems to get sick easily from a very small infection. She has had chronic strep, bladder infections and constipation since age 2. He seemed intrigued by the Pandas and was willing to do the addt'l blood work. I'm glad I brought it up at the appt and didn't just leave it alone. Link to comment Share on other sites More sharing options...
ShaesMom Posted July 3, 2009 Author Report Share Posted July 3, 2009 In terms of your other study, our dd had CD3 and CD4 percentages at the top of the range of normal while her CD8 percentage was at the bottom of normal. The CD8 is essentially the Cytotoxic response (i.e., T-cell suppressors). Whereas CD4 drives the helper cells (such as inflammatory Th2 response). As an interesting note, Azithromycin shifts Th2 response to Th1 essentially increasing the cytotoxic response and reducing the inflammatory Th2 response. Very interesting the similarity in what you found with our own situation. Thanks for posting. Buster Buster, Interesting! Her CD8% was 18 with 18-35 being the normal range. Her CD3 & CD4 were above the normal range. Our immuno took one look at these results, said her immune system wasn't working properly and that we should be able to get insurance to approve IVIG with no problems. the nurse whom I spoke with at his office told me that the most common immune problems they see are due to the Pneumococcal Titers. Sam Link to comment Share on other sites More sharing options...
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