Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 " I'm in N FL. So does that mean it should be for a long time? I read in my medical book for down syndrome that some kids can have it for life and others is needed a shorter time. The ID dr here would not diagnose him...it appeared to be the Common Invariable Immune Deficiency?...Any contacts you can give me would be great " , Glad the ID doc was able to intervene. If he, or an immuno, decide that the diagnosis is CVID, then you you may want to look at the treatment protocol for your " average " CVIDer: prophylactic administration of human immunoglobulin every 3 weeks throughout the patient's life, along with systemic antibiotics (as needed) for the management of concomitant infections. Many times, kids with CVID have variation in T-cell function -- but I am not sure if this is what you are facing. Without a diagnosis, it is difficult to get on secure and appropriate treatment path. If the ID doc can't help you, you may want to consider finding a good immuno. If you need help with this, go to the websites for the Jeffery Modell Foundation and the Immune Deficiency Foundation, and ask parents in this group -- consensus is very important. I assume that you are N. of Gainesville, yes? Between Georgia and Miami, you have options. = ) There are a few others not so far away and they might have ideas... mom to CVIDer Quote Link to comment Share on other sites More sharing options...
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