CFHockeyMom
New member
I'm looking for some advice/opinions. As you know, my youngest son has CF. When he was diagnosed at 11 weeks we had our oldest son tested (sweat test). He was 2 1/2 at the time and the test came back negative. I don't remember the number and am not sure I ever knew it. CF was so new to me, and we were still in shock, that negative was all I needed to hear. Well, for the past few years, my husband has begun wondering if maybe the sweat test wasn't conclusive and our oldest does indeed have CF. He didn't suffer from any of the tell tale signs as a baby. In fact, he was a very healthy baby. However, as he's gotten older, we've made a few observations that have us wondering. Firstly, he's soooooo skinny. He eats and eats but is little more than a stick figure. Secondly, he is more prone to colds/coughing than our "official" CFer. In fact, he's missed more school than our CFer. Lastly, he's recently developed some digestive issues. Nothing consistent but still worrisome. Are we just being paranoid?
My husband would really like to have the Ambry (sp?) blood testing done. My question is how do we go about getting this done? Should we go through our regular pediatrician or pressure our CF Dr?
Thanks in advance.
My husband would really like to have the Ambry (sp?) blood testing done. My question is how do we go about getting this done? Should we go through our regular pediatrician or pressure our CF Dr?
Thanks in advance.