ShaesMom Posted August 21, 2009 Report Share Posted August 21, 2009 Hi everyone, I'm not really sure where to begin so here's goes: Many of you have probably read that Shae was dx'd in June with a Primary Immune Deficiency called CVID or SAD in addition to her PANDAS. This was discovered by her allergy doctor running a complete Immunological bloodwork panel. She came back with normal levels on all antibodies or immunoglobulins (Igg, Iga & Igm) and her Igg subclasses levels were all normal as well. They also did what is called a Pneumococcal Titers test. Buster can probably give you a better description of how it works but the gist of it is that they tested her antibodies to see if they actually worked when faced with an infection. She failed 12 of the 14 strains. What this means is that even though her body makes normal levels of antibodies they do not work correctly. When she has an infection, instead of going to work and fighting it-her antibodies do nothing. I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection. If your child is under the age of 10, it is likely they received the Prevnar vaccine during their routine vaccination schedule. The Prevnar vaccine is to guard against seven of the Pneumococcal titers. Another name for the Pneumococcal titers is streptococcus pneumonea. The vaccine protects against strep. pneumonea, meningitsis, and pneumonia. You can learn more about the vaccine and what it does at www.prevnar.com. Click on the dancing Pneumo guy and it will take you to a link with an animated video regarding the vaccine. Any doctor out there is going to tell you that strep pneumonea and strep A are different strains. This may be true, but if our kids cannot fight infection to strep pneumonea how do we know that they have the ability to fight off a strep A infection? We don't and neither do the doctors. The benefit of being dx'd with a primary immune deficiency (PID) is that if IVIG is recommended-insurance should pay for it! Unlike Pandas, it is a recognized disease. I would strongly like to encourage anyone who has not already done so to please request the following tests for your PANDAS children: IGG & IGG subclasses IGM IGA Pneumococcal Titers Test Tetanus Titers Test Diptheria Titers Test You can learn more about PID's at the Immune Deficiency Foundation's website www.primaryimmune.org Click on the link to the Publications and then the link to the Patient & Family Handbook. Read Chapters, 1, 2 & 10. You can call them at 800-296-4433 and ask for a doctor in your area. You can also visit www.jmfworld.com and click on their link to find an expert in your area. We are very possibly on to something here that has the potential to help our kids. Sam Link to comment Share on other sites More sharing options...
NancyD Posted August 21, 2009 Report Share Posted August 21, 2009 This is EXCELLENT, Sam...thank you (and Diana) for doing this terrific work!! Wouldn't it be great if we could develop an in-depth questionnaire and start collecting data on all our kids -- data that could be used in a research study. Any ideas, Buster?? Nancy Hi everyone, I'm not really sure where to begin so here's goes: Many of you have probably read that Shae was dx'd in June with a Primary Immune Deficiency called CVID or SAD in addition to her PANDAS. This was discovered by her allergy doctor running a complete Immunological bloodwork panel. She came back with normal levels on all antibodies or immunoglobulins (Igg, Iga & Igm) and her Igg subclasses levels were all normal as well. They also did what is called a Pneumococcal Titers test. Buster can probably give you a better description of how it works but the gist of it is that they tested her antibodies to see if they actually worked when faced with an infection. She failed 12 of the 14 strains. What this means is that even though her body makes normal levels of antibodies they do not work correctly. When she has an infection, instead of going to work and fighting it-her antibodies do nothing. I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection. If your child is under the age of 10, it is likely they received the Prevnar vaccine during their routine vaccination schedule. The Prevnar vaccine is to guard against seven of the Pneumococcal titers. Another name for the Pneumococcal titers is streptococcus pneumonea. The vaccine protects against strep. pneumonea, meningitsis, and pneumonia. You can learn more about the vaccine and what it does at www.prevnar.com. Click on the dancing Pneumo guy and it will take you to a link with an animated video regarding the vaccine. Any doctor out there is going to tell you that strep pneumonea and strep A are different strains. This may be true, but if our kids cannot fight infection to strep pneumonea how do we know that they have the ability to fight off a strep A infection? We don't and neither do the doctors. The benefit of being dx'd with a primary immune deficiency (PID) is that if IVIG is recommended-insurance should pay for it! Unlike Pandas, it is a recognized disease. I would strongly like to encourage anyone who has not already done so to please request the following tests for your PANDAS children: IGG & IGG subclasses IGM IGA Pneumococcal Titers Test Tetanus Titers Test Diptheria Titers Test You can learn more about PID's at the Immune Deficiency Foundation's website www.primaryimmune.org Click on the link to the Publications and then the link to the Patient & Family Handbook. Read Chapters, 1, 2 & 10. You can call them at 800-296-4433 and ask for a doctor in your area. You can also visit www.jmfworld.com and click on their link to find an expert in your area. We are very possibly on to something here that has the potential to help our kids. Sam Link to comment Share on other sites More sharing options...
ShaesMom Posted August 21, 2009 Author Report Share Posted August 21, 2009 Excellent Idea and it reminds me that Diana and I are trying to keep track of how many kids have these tests and what the results are. So, please inform one of us if you have this bloodwork done and what you find out. Also, if you have these tests done and find your child has low levels of Ig's or fails the titers but your Doctor doesn't want to treat--Get a second opinion! Link to comment Share on other sites More sharing options...
ShaesMom Posted August 21, 2009 Author Report Share Posted August 21, 2009 I have the names of two Immunologists who were recommended by a Mom in PA who has a son with a PID. They are: Dr. Rebecca Buckley at Duke in NC and Dr. Perez at the Children's Hospital of Philadelphia. Link to comment Share on other sites More sharing options...
thereishope Posted August 21, 2009 Report Share Posted August 21, 2009 I'm sorry, but can you explain the connection to Prevnar? So it's bad our kids got that vaccine? All 3 of mine got it. Hi everyone, I'm not really sure where to begin so here's goes: Many of you have probably read that Shae was dx'd in June with a Primary Immune Deficiency called CVID or SAD in addition to her PANDAS. This was discovered by her allergy doctor running a complete Immunological bloodwork panel. She came back with normal levels on all antibodies or immunoglobulins (Igg, Iga & Igm) and her Igg subclasses levels were all normal as well. They also did what is called a Pneumococcal Titers test. Buster can probably give you a better description of how it works but the gist of it is that they tested her antibodies to see if they actually worked when faced with an infection. She failed 12 of the 14 strains. What this means is that even though her body makes normal levels of antibodies they do not work correctly. When she has an infection, instead of going to work and fighting it-her antibodies do nothing. I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection. If your child is under the age of 10, it is likely they received the Prevnar vaccine during their routine vaccination schedule. The Prevnar vaccine is to guard against seven of the Pneumococcal titers. Another name for the Pneumococcal titers is streptococcus pneumonea. The vaccine protects against strep. pneumonea, meningitsis, and pneumonia. You can learn more about the vaccine and what it does at www.prevnar.com. Click on the dancing Pneumo guy and it will take you to a link with an animated video regarding the vaccine. Any doctor out there is going to tell you that strep pneumonea and strep A are different strains. This may be true, but if our kids cannot fight infection to strep pneumonea how do we know that they have the ability to fight off a strep A infection? We don't and neither do the doctors. The benefit of being dx'd with a primary immune deficiency (PID) is that if IVIG is recommended-insurance should pay for it! Unlike Pandas, it is a recognized disease. I would strongly like to encourage anyone who has not already done so to please request the following tests for your PANDAS children: IGG & IGG subclasses IGM IGA Pneumococcal Titers Test Tetanus Titers Test Diptheria Titers Test You can learn more about PID's at the Immune Deficiency Foundation's website www.primaryimmune.org Click on the link to the Publications and then the link to the Patient & Family Handbook. Read Chapters, 1, 2 & 10. You can call them at 800-296-4433 and ask for a doctor in your area. You can also visit www.jmfworld.com and click on their link to find an expert in your area. We are very possibly on to something here that has the potential to help our kids. Sam Link to comment Share on other sites More sharing options...
NancyD Posted August 21, 2009 Report Share Posted August 21, 2009 Sam, After I sent you my earlier response in another thread I went to look at Sarah's test results. The only test I don't see is the Pneumococcal Titers. Do they call it something else? If we were to take it now would it be affected by the IVIG? Her titers for ALL vaccines have been high eversince she was 5 so she has been exempt from all other vaccines and has not had one since. And, as I said earlier, her IGG levels were always low but not low enough to be classified as immune deficient. Do you want results prior to IVIG? Do you also want ASO and Anti-DNASE B or no? Nancy Link to comment Share on other sites More sharing options...
Suzan Posted August 21, 2009 Report Share Posted August 21, 2009 This is EXCELLENT, Sam...thank you (and Diana) for doing this terrific work!! Wouldn't it be great if we could develop an in-depth questionnaire and start collecting data on all our kids -- data that could be used in a research study. Any ideas, Buster?? Nancy We are ready and on board here for any type of information collection! We are one of the "failed titer" families currently searching for a doc who might be willing to start the search with us. Susan Link to comment Share on other sites More sharing options...
Buster Posted August 22, 2009 Report Share Posted August 22, 2009 Hi Folks, Well, I have a whole bunch of papers on this topic.... There seems to be some disagreement in the papers about how to interpret the tests. Some say that there is supposed be a residual amount of antibodies in the blood, others indicate that you have to reimmunize and then check the antibody levels. A relatively readable paper on hyporesponsiveness is at: http://iai.asm.org/cgi/reprint/76/11/5305 What was interesting in the above paper was the reference that carriage (i.e., nasal colonization) at the time of innoculation might invalidate the innoculation since all B-cells are depleted. When I get home I'll send the papers I got from the Center for Disease Control that provided charts of the antibody levels expected per age group. As far as I can tell, there weren't great studies of the long term protection. But I'll post what I have and what I think the materials mean. Regards, Buster Hi everyone, I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection. Link to comment Share on other sites More sharing options...
ShaesMom Posted August 22, 2009 Author Report Share Posted August 22, 2009 I'm sorry, but can you explain the connection to Prevnar? So it's bad our kids got that vaccine? All 3 of mine got it. No, I'm not saying that it is bad that your kids got it. Both of mine had it as well. Hopefully, I will explain this correctly. It is given for the same reason that our kids are given the Chicken Pox vaccine. The Prevnar vaccine exposes our children to the streptococcus pneumonea, meningitsis, and pneumonia. The purpose of the vaccine is so that their immune systems will learn to make the necessary antibodies to those particular illnesses. Then later when they come in contact with those illness in the real world their immunoglobulins/antibodies will recognize them as foreign invaders and attack them. I found the Prevnar website to have the best explanation of what the Pneumococcal titers were when I was doing my research. That's the only reason I mentioned it. Nancy-Yes, monthly IVIG would effect all of her test results. It is my understanding you should wait at least three months to retest the levels after IVIG. Buster has found some studies that supposedly invalidate the pneumococcal titers results. My response is-- There is a whole community of Parents and Patients with immune deficiencies who are receiving monthly IVIG based on the Pneumococcal titers results. These are people of have been sick there whole lives and have found relief through their diagnosis'. And if this research is correct--then why have the insurance companies not latched on to these studies and refused to pay for monthly IVIG? Why have the vaccine companies not jumped on the bandwagon as well and insisted that the vaccines need to be given annually? Think of the money they would make. I will agree that it is standard practice to revax after a failed pneumococcal titers test and then retest approximately 3 weeks later. But this does not guarantee that your child will make the titers the second time around nor does it mean if they do make the titers that they will hold for the rest of their lives. If anyone has doubts or more questions, I would suggest you call the Immune Deficiency Foundation or visit there discussion forum. Any of the parents/patients there will tell that there illnesses are just as real as PANDAS. We all know that there is plenty of "research" out there that claims PANDAS is not a real disease. Link to comment Share on other sites More sharing options...
Buster Posted August 22, 2009 Report Share Posted August 22, 2009 Okay, a good reference from the original clinical data regarding PREVNAR can be found at http://www.fda.gov/BiologicsBloodVaccines/...s/ucm093833.htm (don't ask me how I found this :-) ) I recommend looking at table 46 on page 59 at http://www.fda.gov/downloads/BiologicsBloo...s/UCM137169.pdf Serotype Pre-dose 3 Post Dose 3 Pre dose 4 Post dose 4 4 0.078 1.46 0.31 2.38 6B 0.327 4.70 1.71 14.45 9V 0.180 1.99 0.57 3.51 14 0.198 4.60 1.45 6.52 18C 0.146 2.16 0.50 3.43 19F 0.374 1.39 0.55 2.07 23F 0.174 1.85 0.44 3.82 What you'll see is that there is a baseline antibody level pre-innoculation and then a 10-12x rise in antibody after innoculation. Each innoculation increases the antibody response. This is the intention of vaccines (i.e., that repeated exposure causes more virulent response by the humoral system). Typically 6B and 14 are active and all the others come out negative (i.e., <0.3ug/ml) in a baseline test unless the subject has recently been exposed to one of the serotypes (i.e., got strep-pneumo). So if your child is not registering a response (i.e. < 0.3 ug/ml) on the antibody test for all but 6B and 14, that could be consistent with a long delay since last exposure. I have lots more papers on the topic -- but the short summary are the papers are about the response of the immune system to exposure. Regards, Buster Well, I have a whole bunch of papers on this topic.... There seems to be some disagreement in the papers about how to interpret the tests. Some say that there is supposed be a residual amount of antibodies in the blood, others indicate that you have to reimmunize and then check the antibody levels. There is cross-reactivity between the serotypes so a response on one of them tends to drag some of the others along. Link to comment Share on other sites More sharing options...
peglem Posted August 22, 2009 Report Share Posted August 22, 2009 My daughter (14 yo) has never had Prevnar. Her immune testing was done using the pneumovax. Link to comment Share on other sites More sharing options...
ShaesMom Posted August 22, 2009 Author Report Share Posted August 22, 2009 Prevnar was introduced in the year 2000 and is now given to anyone under the age of I believe 5. Anyone older than 5 and adults receives the Pneumovax vaccine. Link to comment Share on other sites More sharing options...
Buster Posted August 22, 2009 Report Share Posted August 22, 2009 My dw indicates that I'm not being clear enough.... Unless you revaccinate and look at the levels, then it's not clear what the low levels mean. High levels indicate recent infection or re-innoculation. see "Prevention of Pneumococcal Disease: Recommendations of the Advisory Committee on Immunization Practices" http://www.cdc.gov/mmwr/preview/mmwrhtml/00047135.htm REVACCINATION Duration of Immunity Following pneumococcal vaccination, serotype-specific antibody levels decline after 5-10 years and decrease more rapidly in some groups than others (56,57,61-63), which suggests that revaccination may be indicated to provide continued protection. However, data concerning serologic correlates of protection are not conclusive, which limits the ability to precisely define indications for revaccination based on serologic data alone. I'm not sure I'd revaccinate our dd -- scared enough of everything to mess with anything ... :-) Buster Link to comment Share on other sites More sharing options...
ShaesMom Posted August 22, 2009 Author Report Share Posted August 22, 2009 Here are some links to articles/research I have found on Selective Antibody Deficiency. http://www.jacionline.org/search/quick?res...dy+deficiencies http://pedsinreview.aappublications.org/cg...tract/21/10/358 http://www.liebertonline.com/doi/abs/10.1089/pai.2006.19.51 http://www.uptodate.com/patients/content/t...~/3O3rTLTTn__c/ http://www.wane.com/dpp/wildcard_1/wildcar...mune_Deficiency Link to comment Share on other sites More sharing options...
mom md Posted September 15, 2009 Report Share Posted September 15, 2009 We got our labs today and we failed 10 of the 14 prevnar levels and diptheria vaccine as well. His IgE was extremelly elevated (240). Have not great idea of what this meand yet but interesting. We are heade to see Latimer Wed and the immunologist again in three weeks. We are also allergic to soy and baker's yeast. Very strange. Link to comment Share on other sites More sharing options...
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