We met with a pediatric pulmonologist yesterday, FINALLY! We really liked him, he was personable and explained everything to us and seemed to have a very positive attitude about our situation. He ordered a chest x-ray and said he sees no evidence of any pulmonary damage and the diaphragm looked good~ so relieved. He did say her liver appeared enlarged which her GI doctor also mentioned feeling her liver lower than normal- not sure what this signifies. We had 2 separate sweat tests done yesterday (they did not get enough sweat the first time). The second test only obtained enough sweat from the right arm and it was 12ml/ L. (Her original sweat test was done at another clinic and was 13 & 17). He also ordered a full genetic test from Ambry and a fecal (elastase?) test. He seemed optimistic that she will not be diagnosed with CF so we are taking that as a very good sign.
Just wanted to thank everyone here who shared their stories with me and gave me such wonderful advise. Im not sure we would have gotten this far without the encouragement to push for more testing, form the bottom of our hearts, THANK YOU!
Just wanted to thank everyone here who shared their stories with me and gave me such wonderful advise. Im not sure we would have gotten this far without the encouragement to push for more testing, form the bottom of our hearts, THANK YOU!