Cystic Fibrosis? - Minneapolis,MN

I don't have an answer for you, but I can share with you a little about the symptoms prior to being diagnosed. From the time my niece was born, she had poopy diapers 15 or more times a day. Before she even finished a bottle, she would be pooping her diaper. This went on for about 18 months until she was finally diagnosed with CF. If your son is not having problems with his BM's, I wonder if its CF at all? Both parents as we found out later were carriers of the gene ( I think thats how it went). I know its easier said than done, but try not to worry until you know for sure.

My youngest daughter is in the same situation. She is 26 months old and has had pneumonia 5 times and hospitalized twice. She has seen every type of specialist. She has had the chloride sweat test twice, once at 6 months and repeated at at 18 months. I work in laboratory sciences so I have performed this test on many children, and it doesnt make it any easier when it's your own. A measurement of greater than 60 almost always ends in a diagnosis of CF. A measurement between 40-60 is what our dr suggest as a grey area. Both test were around 58 but never exceeded 60. I had a CF genetic screen done with all my pregnancies and they came back negative, but they are only specific for a few types of CF mutations. As of right now she has only been diagnosed with asthma and we will continue to look for answers as problems arise. I just wanted you to know that I know how you feel and it is scary, but it is a rare disease and one that people are surviving. I wish you luck, and will have your family in my prayers. I have been where you are and if you have any question or need someone to talk to please contact me!

Lisa,
I can imagine you're beyond worried but CF is not as horrible as it once was. My mom's boyfriend has a son in his mid 20's and doing well -- he doesn't even do all the things he's supposed to and still manages to live a very full and fun life (probably too fun).
Anyway, I wanted you to know that it's not as bad as it used to be -- and to let you know it's ok to worry. Hang in there!!

Hi there! My son was diagnosis with CF with his newborn screening. He is now 4 years old and doing extremely well! I am here to tell you that if he does happen to have CF he can still have a very active, healthy life with the right treatments. I do remember when our ped doc told us that he tested positive and we needed to have a sweat test done on him to make sure - I was horrified. Now 4 years later it's doesn't seem like such a scary thing anymore. So try not to worry to much (I know easier said than done). If you ever have any questions or just want to talk my email address is ____@____.com luck and god bless!

J.