Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Hi, I don't know if I might be of help here, or if I might even be repeating myself. But I have the same problem as your daughter - that I don't make antibodies to the pneumovax/prevnar which means basically that someone doesn't make a good enough amount of antibodies to the polysaccharide coated bacteria (and there are quite a few of those type of bacteria out there). I also have an IgA deficiency (which is the antibodies that coat your mucous membranes - nose, lungs, etc.). I only know this b/c I've been through all the immunology testing b/c I had repeated sinus infections that had to be surgically cleaned out and even then, didn't go away! I was on antibiotics for almost 10 years straight. What has worked an absolute wonder for me is IVIG - or gammaglobulin given intravenously (only now I take it subcutaneously b/c that way I get NO side effects and it's easier time-wise b/c of my kids). It has cut my infections to maybe 2-3 a year and they respond immediately to antibiotics. What are they thinking of doing with your daughter? Have they suggested IVIG? I know that's a big step to take - my older son (non-mito) has the same problem only we haven't started him on IVIG b/c his infections aren't occurring as often as mine were - he's a bit more healthy. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Hi, I'm going to give you a website of the Immune Deficiency Foundation which ha TONS of information on Primary Immune Deficiencies (which basically means it's an immune deficiency not caused by HIV or steroids, etc.): http://www.primaryimmune.org/ If you want to pursue this kind of testing, you do have to find a "true" immunologist not an immunologist that specializes in allergies. Where are you located? I may be able to help you find a "good" immunologist as I'm hooked up on-line with a group who have children with PIDs and I and my older son has one as well. The testing involves bloodwork and, sometimes, vaccinations then bloodwork to measure the response to the vaccination (you've probably already done those vaccinations, so they'd just measure the blood and see if the antibodies are at the level they should be). I was told for year that I was so sick b/c I worked with children. After 15 years of working with children, I started to question the drs b/c I was not building up any immunity to their illnesses. I still got as sick as I did when I started. Plus, the sinus infections that controlled my life.... Hope this helps. Anne R Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.