Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 The treatment for NEMO is IVIG, ABX and likely transplant. However, I suspect that we will have to wait until we go to the NIH to know much more. I read an article today with information from the NIH that says that they haven't had a patient live past age 20 without transplant. Unfortunately, we don't have a healthy sibling donor, which greatly reduces the success rate for transplant. As for your kids' medical issues, you're just a mom, not a doctor. Don't beat yourself up over this. You are doing the best you can and you are a terrific advocate for your kids! Hindsight is always 20/20 and moms tend to look back at the past and feel badly. We are all making the best choices for our kids with the knowledge available to us at any given time. We can't do more than that. Hang in there! Quote Link to comment Share on other sites More sharing options...
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