New Member

Hi sydsmom,

My daughter Katie is 1 yo. She was dx'd w/ CF @ 5wks of age. We had no idea that we were carriers. That day of diagnosis is one I'll never forget either. Her newborn screening test came back high for Cf, but the doc told me she was a carrier. She was having constant feedings but not being satisfied, almost constant crying and stomach pain with feeds, poor weight gain.  She tasted salty. I'm a pediatric nurse and I knew something was wrong,but they kept telling me it was colic, breast milk allergy, etc. At our 2 week check up, I pushed for a referral to the Cf clinic. we did bloodwork and DNA analysis and got the confirmation. I had 2 friends die of Cf (in their 30's), so devastated was a good word.

Now, after a year, we have adjusted and have our own "normal". We are pros at giving enzymes and nebulizers and chest percussion. Doing CPT with a 1yo is like wrestling an octopus! That your daughter is 10 and doing well gives me SO much hope and encouragement! I would also like to know how other CF moms handle things with their kids. Thanks!

Thanks, auggie! I know I have 5yrs yet until school, but I worry about how we're going to fit in school, extracurricular activities, homework, breathing treaments, etc all into one 24 hr day....plus still be able to get some sleep!
Thanks for the supportive words!

Hi!! I also am a brand new member. I just joined today. I'm glad to hear that your daughter at least is now receiving treatment. I agree with a previous poster that exercise is critical for cystic fibrosis. I am a 21 year old who was diagnosed 6 hours after birth due to a perforated bowel (I'm not sure on the spelling there, sorry) but I have to give my parents credit. They always pushed me to be active. I was in band and I would run and play just like any normal person. I'm currently a senior in college and am going for secondary education. I know it's going to be tough, but I've been told that I can do anything as long as I put my health first.

I did go through a very hard period as a teenager when I wanted to be out doing things like other teenagers, but instead I had to do my vest and inhaled nebs. One of the hardest and best things my parents did was let me handle my own therapy and when I refused to do it, they stepped back. They told me I should but they never forced me. I ended up getting quite sick my senior year of high school and realizing that I better start doing my therapy. It did, however, take that to make me realize it. My parents told me recently that it was the hardest thing they ever had to do but my doctor had advised them that I needed to start taking over my own health care otherwise I would never do it as an adult. I think they were quite right because I now understand that it is my responsibility.

I think personally it is a hard transition to go from being a kid and teenager with CF to an adult with CF as the workplace and college setting present some new problems. It sounds like, however, that your preparing your daughter to also feel like she can do anything even though she has this disease, and in my opinion that is worth more than anything. Encourage her in everything she does. If you have any questions feel free to reply and ask. I wish you the best of luck and my prayers are with you.

Meg