17 month old test for CF today! - Cystic Fibrosis Message Board

06-14-2002, 11:16 AM

Hey guys- My baby got tested today (by blood) for CF. I am so worried but yet at the same time relieved that we will finally know! I have two weeks to wait! I'm scared. Anyway if she is to be positive what is the next step?

Proud mom · 06-14-2002, 03:23 PM

My daughter was diagnosed with CF at 2 yrs. old, so I think I have a good idea what you've been going through. If your daughter is diagnosed with CF, I'm sure you will be sent to a specialist who is part of a chest/lung/respiratory clinic. There you will be seen by a variety of people, dietician, respirologist, physiotherapist, who will be able to tell you what your daughter's present needs are medically. Every CF case is different, depending on the genetic make-up.....and the Dr.s probably will not give you much concrete info. about what the future holds.
For us, the biggest adjustment in the beginning was setting up a consistent routine of physiotherapy and medication, including use of digestive enzymes for weight gain. Try to take one day at a time, ask lots of questions, and hopefully, find family support.

Annabelleli · 08-21-2002, 07:49 PM

Hi - maybe you two or others on the board can help me? Or direct me to CF 101 - so I can find some answers to what may seem to you like trivial questions... I have a 17-month old son. He seems healthy. But in trying to conceive child #2, I was instructed to take a now protocol blood test to determine if I am a CF carrier. Turns out I am. So now dh will be tested to see if he is. I've been told that if both parents are carriers, odds are 1 in 4 that baby would have CF. So, we're on hold for making any new babies. But, more importantly, as I said, my son is very healthy. I read on the internet that most CF is diagnosed before age 3. Is this true? He doesn't exhibit any of the symptoms I've read about - but I'm wondering if they could just be delayed. He is skinny for his age (25% perecentile) but he is very active and growing (no failure to thrive)well. If dh is a carrier, I will have my son tested, but was just wondering if you could share your stories with me.
Alison - your post is a few months old....how did your child's test go?
Thank you! A