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?
Monday, March 22, 2010
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4 comments:
You definitely deserve it! Sorry that you aren't any closer to a "cure".
You guys will be in my prayers!!
Jen, ever since I saw you the other day, I've been thinking of you and wondering how you've been. We are struggling with fevers, pus-filled throats, and...as of a couple of hours ago...vomiting. It doesn't end for us either! But, at least I know that V has an immune deficiency and C has a heart defect. KNOWING is a luxury that you don't have right now...but I feel that you will KNOW what's going on someday. It's the waiting that must be so hard. You can KNOW, however, that I love you...SO MANY people love you, Jen!
Deb- I am so sorry! It is not fun--- do you need anything? Why did I ask, I'll just call you instead. I know you know exactally how I feel! We do know that Ryan has IgG Def. as well his traps, so he has an immuo diff. on top of his other- It's Davin who we still don't understand. Ryan woke up with bronc. again- I'm taking tham back to Dr. Osgethorpe soon and hopfully they can light a fire under the NIH's backside:) Thanks for always being a good friend!
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