we got grayson's bloodwork back yesterday. they tested for 14 foods, and only one came back negative. i know i asked you to pray for just ONE to come back negative, but i didn't really think it would happen that way. so, grayson can eat codfish. i'm hoping costco sells it in bulk. our dr is concerned about a possible eosiniphilic disorder. http://www.apfed.org/egid.htm we have to see a specialist at UNM now, who will more than likely send us to a children's hospital in either cincinnati or denver. hopin' for denver. two of our best friends live there, and could offer much needed support during our stay. so, there it is. don't really have much more to say than that. obviously i'm bummed. we are still seeing his chiropractor and praying that he will be able to help in unexplainable ways. his skin looks GREAT right now. just a slight flare up on his arms at the moment, but other than that, he looks really really good and he took his nap today UNPINNED!! so we'll see how nap#2 goes. kenny found him upinned and on his tummy this morning, so clearly he's just getting too strong. i will be THRILLED if he can remain unbound and free during sleeptime. :) so, there it is.
Tuesday, May 13, 2008
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6 comments:
hang in there, friend. His Grace is sufficient for this, for g-man and for you and your family....i love you and know you will become stronger for having gone through this on the other side....you are surrounded by love, support and prayer to help ya in the meantime..
I'm really excited that the chiropractor seems to be making a difference!! In spite of the fact that there are concerns about a more serious problem, the improvement is encouraging if for no other reason than Grayson's comfort and everyone's relief that he can sleep on his own (hopefully!). Hang in there - push for a quick diagnosis. I'll be praying for you big-time!! anna
Hi Amy,
I hope that Grayson is going to feel better very fast. I'am sur that you'll find a medical treatment.
I send you all my courage from France.
the apfed sounds gastro...does he have those problems, too? i'm glad the chiro seems to be helping...according to what i read a symptom of apfed is "faiure to thrive"....after seeing him this weekend, that CERTAINLY isn't a problem! he looks so healthy! he is a doll! jan
Gosh, I'm feeling for you girl. We went through this along with so many other suspected problems. When Cooper was about 2mo, they suggested EE or EGDE. The pedi took blood and tested it to see if there was an elevated number of eosinophils present. There wasn't so he didn't push for further testing at the time. He had already been sedated and had a scope and we didn't want him to go through invasive testing again. Maybe Grayson could have this blood test. It is not a dx, but it might buy you some time. It is still a possibility that Cooper has is, but for now we have put it out of our minds. I know how scary reading about this disease is. I have walked in those shoes. We love Cook Children's in Ft Worth. Perhaps you guys could go there. Cooper and Lydia both go there. They are wonderful and you would be close to us where you are always welcome. I have heard wonderful things about Cincinnati as well. They are definitely some of the best. Wow, this is getting really long. I'm just going to call you.
Hey. . . I talked to Dr. C today and he told me that he had mentioned an EGID to you. I know it doesn't seem like it now but going through this a year ago, we had a sense of relief when we got Carter's dx. At least we know what we are up against. I know I have mentioned this before but just remebe rthat just because he has food allergies and an elevated eosinophil level does NOT mean he has an EGID. Only 1/3 of EGID patients have an elevated eos level and there are many patients who have an EGID and no food allergies. If it does turn out that that is what he is dealing with, Cincinatti is wonderful and we will be trying out Denver next month. There is so much research happening right now. It will all work out. . . I promise.
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