Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 , She sounds almost exactly like me as an adult. Only I had one sinus surgery and refused another one b/c it was so painful for me. There's a onelist for kids with primary immune deficiency AND there's a wonderful wonderful immune deficiency website that has tons and tons of info. Plus your immunologist can contact one of the experts free .... I'd strongly encourage you to get this info and find a very good immunologist b/c she sounds like she has a pid (my .02 cents anyway). I don't have the website address handy but if you type on immune deficiency foundation or IDF you should be able to find it. There's one that's British and one that's US and the most helpful one I've found to be is the US one. Good luck and keep me posted. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 , She sounds almost exactly like me as an adult. Only I had one sinus surgery and refused another one b/c it was so painful for me. There's a onelist for kids with primary immune deficiency AND there's a wonderful wonderful immune deficiency website that has tons and tons of info. Plus your immunologist can contact one of the experts free .... I'd strongly encourage you to get this info and find a very good immunologist b/c she sounds like she has a pid (my .02 cents anyway). I don't have the website address handy but if you type on immune deficiency foundation or IDF you should be able to find it. There's one that's British and one that's US and the most helpful one I've found to be is the US one. Good luck and keep me posted. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 has always been ill. They have done basic immune function testing but it has never shown any problems. They have done ( I think) IgG and IgE but nothing else as far as I know. is almost 6 and has had sinus infections since the age of two. She has has two sinus surgeries and they are talking about redoing it again. She has been on constant antibiotics for two years (at least). Currently she is getting synagis (which has an IgG component) and it has made her healthier. She gets injections once a month for 5 to 6 months. We took her to National Jewish this summer because they are supposed to be pulmonary and sinus specialists. They told us that nasal washes would cure her problem. Needless to say, they did not. We are currently doing six weeks of abx alternating between three types. Then we will go two weeks without them ( don't know how we will do this without ending up in the hospital) and have her sinuses cultured. So far, they have only found normal respiratory flora. has had only two bouts of pneumonia and one bout of RSV. She had extended hospitalizations for each. One of the pneumonias was after her Prevnar vaccine. It took her a good two years to recover from her RSV (also had aytypical pneumonia at the same time) I do not believe that they have done subpanels for IgG. Many docs tend to act as if this is no big deal. Grrr. Thanks for the test ideas. Any more would be appreciated. Quote Link to comment Share on other sites More sharing options...
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