Update

We heard back a little from the NIH last week. They are still not sure what else is going on with the boys, but it seems that they have something else besides their TRAPS disease. Davin's kidney results were off, his platelets were low and still did not respond to the immunizations. Ryan has an IgG def., which means his immune system is not responding well. These issues could explain why their TRAPS disease, which is an inflammatory disease, is spiking so often. It means they are actually getting sick easier than most kids, but when others start to get better, their TRAPS flares. The great news is so far the full strength antibiotics that they are on is keeping things at bay. With less full blown infections, their TRAPS disease is not spiking as often. We still have not heard back about the NEMO disease results, so our ped MD wants us to put Davin on a Gluten free diet and see if that will help him gain weight and grow better. I'm supposed to be on it as well, but, I find myself having one excuse after another not to start. I'm kind of hoping that we hear back from the NIH with some more definitive answers and an action plan that makes sense. Is this asking too much? The past 5 years have been so intense that I think I deserve it- right?