Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 's ped called today with the meningococcal titers. I never called him to check on them... I never wanted the vaccine or the test, felt they were a waste of time. Funny thing is I figured she probably wouldn't have a normal response, but now I'm upset because of how bad the response was. I honestly feel I would have been better off not knowing! All the titers are in the " pre-vaccinated " level range, no protective numbers at all. He seemed flummoxed. Then he brightened, came up with an idea. Said, " Hey! There's a new vaccine, just came out, it's a CONJUGATED version of the vaccine. " I said, " Doctor, that's the vaccine you GAVE her, the conjugated version. " He said incredulously, " These titers are for the CONJUGATED vaccine????? " and was just stunned. He seemed to flip through some paper and confirm this. He sounded so sweetly disappointed. I felt bad for HIM! It's like I had to talk him down from the ledge, I said, " Well, it stinks but it isn't really very surprising, considering she doesn't respond to Prevnar, I mean, meningococcal bacteria is encapsulated also, isn't it? " Here I am, the parent, explaining to the doc why it isn't so shocking she didn't respond. Funny. I mean, I don't expect him to memorize 's history, but I think they only have one other PID patient, you'd think at least the diagnosis might stick. So anyway, he then was so at a loss for words that I found myself reassuring HIM... " We're still hoping maybe it will kick in at some point... maybe puberty... " then I rambled on, " She's had a really great summer!! Her summers are always very healthy, it's wonderful. " Isn't that a scream! He still sounded hesitant and puzzled when he let me go. I found myself more disappointed than I expected, because after all, at least at this point after something like six or eight Prevnars, has at least had some blips here and there and gets some up in the protective range at least for a short time. I'm confused how she hasn't had any more deep-seated infections if her response is this bad. I mean, I know when she had meningitis it was due to an unresolved, resistant ear infection and we NEVER give those a chance to get that far anymore. Maybe that's the key, not letting anything get by. But it just seems like you'd expect her to get more serious infections than she does. The immune system is so mysterious... she catches so many viruses so much worse than her sister, and yet nothing in her blood work explains that. And if her response to polysaccharides is so bad, why does she never get anything too horrible? I mean, for the most part, usually a normal course of abx does the trick. Not that I'm complaining!!!!! Something that always bothered me. I understand why she wouldn't respond to a pure polysaccharide. But why does she not respond to the Conjugated version? I mean, I remember that whatever the protein is that they conjugate Prevnar with (is it diptheria?), had normal titers to the protein (diptheria, or whatever it is). Can anybody explain this very basic question about my own daughter's dx that I never got any doc to explain before? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 : Thank you for clipping that article. The meningococcal bacteria is gram-negative, the pneumococcal is gram-positive. The trait they share is the sugar capsule, they are both encapsulated. I wonder if Prevnar and the conjugated meningococcal vaccine are both conjugated with the same protein?? I was sort of settled down with time... has not been seriously ill with her current diagnosis (5 years) and I have gotten nicely complacent about her condition. Hearing about her lack of response to this new vaccine has me worrying about her all over again. Don't get me wrong, we don't live carefree, easy lives -- we are always missing important events due to illness, she gets sick alot and suffers during the school year. It is hard to see her sick so often and I worry about repeated LRIs. But really, compared to so many pumpkins, she doesn't get seriously ill and responds to oral abx most of the time. So then I feel guilty for being concerned or possibly seeming like I don't appreciate how " good " we have it. My SIL adds to this when she makes comments about how will be sick with something, that she'll think to herself, " Well, MY kids get that... " etc. etc. She drives me nuts, that woman. I know she could just be trying to make me feel better and not worry by saying her kids get the same illnesses, but I don't think her kids' one ear infection a year is exactly the same as 's illness rate. But I can't argue that or it sounds like I'm " competing " , like saying my kid is sicker than your kid, which just sounds sick! She's a frustrating person, very competitive and dramatic and loud and always seeking attention, making up stories and exaggerating to make a great story. But she ACTS so nice and thoughtful, then you let your guard down and she zings you with some comment that isn't quite as nasty as it could be, so you can't really call her on it or you look paranoid. Urrrrrgh. I've about had it with her and at the moment I can barely stand to talk to her. But she calls me all the time! Calgon take me away... from the phone! (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 " I understand why she wouldn't respond to a pure polysaccharide. But why does she not respond to the Conjugated version " Just wondering...was ever check for isohemagluttins? I don't know much about encapsuled bacteria with regard to them being gram neg or pos. This is from Merck: Biologic properties of antibodies: The amino acid structure of the C region of the heavy chain determines the isotype of that Ig class. Each class serves different functions. IgM, the first Ab formed after primary immunization (exposure to new Ag), protects the intravascular space from disease. Pentameric IgM molecules readily activate complement and serve as opsonizers and agglutinators to assist the phagocytic system to eliminate many kinds of microorganisms. Isohemagglutinins and many Abs to gram-negative organisms are IgM. Monomeric IgM serves as an Ag receptor on the B-cell membrane. IgG, the most prevalent type of serum Ab, is also found in extravascular spaces; it is produced when IgM titers begin to decrease after primary immunization. IgG is the major Ig produced after re-immunization (the memory immune response or secondary immune response). IgG protects the tissues from bacteria, viruses, and toxins. IgG is the only Ig that crosses the placenta. Different subclasses of IgG neutralize bacterial toxins, activate complement, and enhance phagocytosis by opsonization. Commercial -globulin is almost entirely IgG, with small amounts of other Igs. IgA is found in mucous secretions (saliva, tears, respiratory, GU and GI tract, and colostrum), where it provides an early antibacterial and antiviral defense. Secretory IgA is synthesized in the subepithelial regions of the GI and respiratory tracts and is present in combination with locally produced secretory component (SC). Few cells that produce IgA are found in the lymph nodes and spleen. Serum IgA does not contain SC. Serum IgA provides protection against Brucella, diphtheria, and poliomyelitis. IgD is present in serum in extremely low concentrations but also appears on the surface of developing B cells and may be important in their growth and development. IgE (reaginic, skin-sensitizing, or anaphylactic Ab), like IgA, is found primarily in respiratory and GI mucous secretions. In serum, IgE is present in very low concentrations. IgE interacts with mast cells; bridging of two IgE molecules by allergen may cause degranulation of the cells, with the release of chemical mediators that cause an allergic response. IgE levels are elevated in atopic diseases (eg, allergic or extrinsic asthma, hay fever, and atopic dermatitis), parasitic diseases, far-advanced Hodgkin's disease, and IgE-monoclonal myeloma. IgE may have a beneficial role in the defense against parasites. bunneegirl@... wrote: 's ped called today with the meningococcal titers. I never called him to check on them... I never wanted the vaccine or the test, felt they were a waste of time. Funny thing is I figured she probably wouldn't have a normal response, but now I'm upset because of how bad the response was. I honestly feel I would have been better off not knowing! All the titers are in the " pre-vaccinated " level range, no protective numbers at all. He seemed flummoxed. Then he brightened, came up with an idea. Said, " Hey! There's a new vaccine, just came out, it's a CONJUGATED version of the vaccine. " I said, " Doctor, that's the vaccine you GAVE her, the conjugated version. " He said incredulously, " These titers are for the CONJUGATED vaccine????? " and was just stunned. He seemed to flip through some paper and confirm this. He sounded so sweetly disappointed. I felt bad for HIM! It's like I had to talk him down from the ledge, I said, " Well, it stinks but it isn't really very surprising, considering she doesn't respond to Prevnar, I mean, meningococcal bacteria is encapsulated also, isn't it? " Here I am, the parent, explaining to the doc why it isn't so shocking she didn't respond. Funny. I mean, I don't expect him to memorize 's history, but I think they only have one other PID patient, you'd think at least the diagnosis might stick. So anyway, he then was so at a loss for words that I found myself reassuring HIM... " We're still hoping maybe it will kick in at some point... maybe puberty... " then I rambled on, " She's had a really great summer!! Her summers are always very healthy, it's wonderful. " Isn't that a scream! He still sounded hesitant and puzzled when he let me go. I found myself more disappointed than I expected, because after all, at least at this point after something like six or eight Prevnars, has at least had some blips here and there and gets some up in the protective range at least for a short time. I'm confused how she hasn't had any more deep-seated infections if her response is this bad. I mean, I know when she had meningitis it was due to an unresolved, resistant ear infection and we NEVER give those a chance to get that far anymore. Maybe that's the key, not letting anything get by. But it just seems like you'd expect her to get more serious infections than she does. The immune system is so mysterious... she catches so many viruses so much worse than her sister, and yet nothing in her blood work explains that. And if her response to polysaccharides is so bad, why does she never get anything too horrible? I mean, for the most part, usually a normal course of abx does the trick. Not that I'm complaining!!!!! Something that always bothered me. I understand why she wouldn't respond to a pure polysaccharide. But why does she not respond to the Conjugated version? I mean, I remember that whatever the protein is that they conjugate Prevnar with (is it diptheria?), had normal titers to the protein (diptheria, or whatever it is). Can anybody explain this very basic question about my own daughter's dx that I never got any doc to explain before? (mom to , age 6-1/2, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
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