Recent content by AceZar8910

We just found out our daughter had CF 3 months ago. We have been going to St. Louis Children's hospital but haven't been very impressed. We are 2 hours away from St.Louis & 2 hours away from Indianapolis plus we have family in Indi. Has anyone been to either of these hospitals? Any suggestions?

Thank you so much Jenny and allislove.

Thank you so much GenH

My daughter just found out she has both of these mutations anyone else with the same?

We spoke with the nurse on the phone down in St. Louis and she told us she didn't know much about the s489x mutation so she would prefer if we spoke with the doctor about it when we came down there next on October 29th.

Thank you so much :)

My daughter just found out she had these two mutations and I didn't know if anyone could tell me anything about these mutations such as what she will being dealing with? Or what these two combined mean? We are seeing a great doctor down in St. Louis at an APPROVED CF CENTER. My daughters age is...

My daughter just found out she has Delta 508 and S489x. I'm not sure what these mean could anyone fill me in a little further?

Right now she just was told by her doctors to have extra salt each feeding and CPT once daily. They told us at the first appointment that we would start giving her vitamins at the next appointment, and then at the next appointment they told us she was doing very well and didn't need the...

They haven't been able to tell yet because she hasn't had a stool while we were at the office yet. They put her on enzymes right off and she was doing better without them so we took her off. She weighed 6lbs 12oz at birth and is now up to 9lbs 8oz as of last week at our monthly visit

Our daughter, Azara Reanne was born August 19th of this year and her newborn screen came back on August 31st, and we got a call from our doctors office telling us that she had a slightly elevated level and that we needed to go down to St. Louis to the Children's Hospital for a sweat test. When...