Recent content by Nikole

Thank you.

Thank you for any help.

DF508 and 711+1G>T, class I. They are PI. My daughters sweat test was like a 128 I think

Can someone tell me how to find out which mutations are considered residual function? I saw where vertex is doing a new study on one df508 and one with a residual function. My kids have a class I mutation and a df508. Thanks.

Hello. I understand the mixed emotions about having another child. Our first born had a massive bowel obstruction and was tested for cf and both times the newborn screening were negative. Nearly three years later we found out that she did indeed have CF. By then, we already had our second...

. My son had to have sugar in his Pregestimil or he wouldn't eat it. He still had some vomiting on it as well, and had a huge tummy. He started Elecare....super expensive, but SAVED HIS LIFE. He only had to stay on it three months. Moved to Pediasure, and doing well. Is your kiddo on reflux...

It's crazy how everyone is so different in the symptoms they display. Thanks for the info.

Question for 2005CFmom..... If you don't mind me asking, what are your daughters mutations? Going 8 yrs without treatments is really good. Just curious

I have a daughter with CF age 7 and a son with CF, age 1. Both of them had bowel obstructions at birth. They both passed the newborn screening in two separate states, and both of their mutations were on the IRT panel. My daughter had two screenings in Oklahoma and both revealed no cf. My sons...

Thank you; that's what I assumed but wasn't sure. Neither of us have CF that I know of, but my mom had a positive/borderline sweat test a few months ago and has many symptoms of CF, although never tested genetically. My husband and I have no symptoms of it .

This is a question for Lou Lou: Hello, my name is Nikole and I am a mom of soon-to-be four kids. We have a 5 year old daughter with CF (delta F508 and 711+1G>T), a 3 year old daughter with negative sweat test and negative newborn screening, a 1 year old daughter with negative sweat test but...

This is a question for Lou Lou: Hello, my name is Nikole and I am a mom of soon-to-be four kids. We have a 5 year old daughter with CF (delta F508 and 711+1G>T), a 3 year old daughter with negative sweat test and negative newborn screening, a 1 year old daughter with negative sweat test but...

Yes, she is seen a CF cinic. She does vest treatments twice daily and does Pulmozyme and HyperSal 7%, along with taking Zenpep 5,000 units, 8 with meals and 2-3 with snacks. It seems like every few months, I have to up the enzymes or she starts getting a lot of tummyaches and greasy floaty...

Yes, she is seen a CF cinic. She does vest treatments twice daily and does Pulmozyme and HyperSal 7%, along with taking Zenpep 5,000 units, 8 with meals and 2-3 with snacks. It seems like every few months, I have to up the enzymes or she starts getting a lot of tummyaches and greasy floaty...

Thanks Bill, but I can't exactly find it?