Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Ursela, So why do they ever put IgA into the immuno-replacement therapies? If it only causes problems, and it doesn't ever help, why do they do it? Do the manufacturers pay attention to the research that shows this? Is there anyone we can contact to cause them to consider this? maurita ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Kathy: Was your son's SALIVARY IgA tested? The reason I ask is that 's blood IgA tested at like 7 or something, but the immuno said that's because they used bovine serum instead of rabbit serum, which proves that has the cow's milk allergy we always thought she had. My question is, is the salivary more accurate? I guess I just don't want to believe has NO IgA. I can't tell you how much it comforts me to know Isaac doesn't have horrible, life-threatening reactions to IGIV because of his IgA deficiency. That scares me so much, but you've given me hope! Have you or your husband been tested for IgA deficiency? We haven't but I know other parents of IgA Def who have been tested. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Kathy: Was your son's SALIVARY IgA tested? The reason I ask is that 's blood IgA tested at like 7 or something, but the immuno said that's because they used bovine serum instead of rabbit serum, which proves that has the cow's milk allergy we always thought she had. My question is, is the salivary more accurate? I guess I just don't want to believe has NO IgA. I can't tell you how much it comforts me to know Isaac doesn't have horrible, life-threatening reactions to IGIV because of his IgA deficiency. That scares me so much, but you've given me hope! Have you or your husband been tested for IgA deficiency? We haven't but I know other parents of IgA Def who have been tested. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Kathy: Was your son's SALIVARY IgA tested? The reason I ask is that 's blood IgA tested at like 7 or something, but the immuno said that's because they used bovine serum instead of rabbit serum, which proves that has the cow's milk allergy we always thought she had. My question is, is the salivary more accurate? I guess I just don't want to believe has NO IgA. I can't tell you how much it comforts me to know Isaac doesn't have horrible, life-threatening reactions to IGIV because of his IgA deficiency. That scares me so much, but you've given me hope! Have you or your husband been tested for IgA deficiency? We haven't but I know other parents of IgA Def who have been tested. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 , Isaac has never had his salivary IgA tested. Actually, I've never heard of it. How is it done? I have had my levels tested since I'm not the healthiest person in the world. My IgA was 79 - Normal was 70 - 380. My IgG was 695 - Normal was 650 - 1600. So it appears that I am in the " normal " range. My husband is one of the healthiest people on Earth. He has never been tested. Our oldest son was tested and is fine. Our daughter is healthy and hasn't been tested. Kathy - mom to Isaac (CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 , Isaac has never had his salivary IgA tested. Actually, I've never heard of it. How is it done? I have had my levels tested since I'm not the healthiest person in the world. My IgA was 79 - Normal was 70 - 380. My IgG was 695 - Normal was 650 - 1600. So it appears that I am in the " normal " range. My husband is one of the healthiest people on Earth. He has never been tested. Our oldest son was tested and is fine. Our daughter is healthy and hasn't been tested. Kathy - mom to Isaac (CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 , Isaac has never had his salivary IgA tested. Actually, I've never heard of it. How is it done? I have had my levels tested since I'm not the healthiest person in the world. My IgA was 79 - Normal was 70 - 380. My IgG was 695 - Normal was 650 - 1600. So it appears that I am in the " normal " range. My husband is one of the healthiest people on Earth. He has never been tested. Our oldest son was tested and is fine. Our daughter is healthy and hasn't been tested. Kathy - mom to Isaac (CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 : Yes, that's EXACTLY what the immuno said, that the " response " could have been to the serum and not the IgA. So they are supposed to make sure to use rabbit antiserum (even so, as in our case, they don't always obey), but the secretory (saliva) test is a way to get around that. I'd recommend it to you for sure, considering the milk allergy issue. That's frustrating that you DID approach the doc the way you did and he STILL acted like a know-it-all jerk. If you DO find a good ped, maybe he/she could write up a little note stating the concerns that you can show to an urgent care person?? You know, " I'm just a lowly parent, but here's a note from our ped saying we're not crazy " . I don't know, that seems like a stupid thing to have to do, but in order to get the care we need, maybe sometimes we have to do stupid stuff! DO continue to try to find a good ped. That has made all of this more bearable for me, our ped is wonderful. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 : Yes, that's EXACTLY what the immuno said, that the " response " could have been to the serum and not the IgA. So they are supposed to make sure to use rabbit antiserum (even so, as in our case, they don't always obey), but the secretory (saliva) test is a way to get around that. I'd recommend it to you for sure, considering the milk allergy issue. That's frustrating that you DID approach the doc the way you did and he STILL acted like a know-it-all jerk. If you DO find a good ped, maybe he/she could write up a little note stating the concerns that you can show to an urgent care person?? You know, " I'm just a lowly parent, but here's a note from our ped saying we're not crazy " . I don't know, that seems like a stupid thing to have to do, but in order to get the care we need, maybe sometimes we have to do stupid stuff! DO continue to try to find a good ped. That has made all of this more bearable for me, our ped is wonderful. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Kathy-- I just want to encourage you to get your IgA /Gsubclasses tested--my numbers were a tad bit lower than normal, and therefore brushed off by an allergist/immuno, but when i finally got to our super-immuno, he tested sublcasses, and i have a significant IgA def, which was masked by the overall #. This is frequently a problem with IgG, as well. My immuno says that IgA def. people with a very low but normal IgG range sometimes benenfit greatly from IVIG. If you have a good immuno, maybe you can ask about that. I know there is a great variance within those working specifically w/pid's. Hope that is helpful. Maurita Mom to Wesley, sel. IgA def, andrew ??, , and ? ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
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