Hello I have a Daughter that is going to be 2 in march and me and my husband just found out last august (2006) that she has Cystic Fibrosis. we were very upset when we found out. but she is doing very well. She also has a tremendous amout of energy, she won't stop running around unless she absolutely has to, it even takes her an hour or so to fall asleep even if she is really tired she will sit in her crib and talk. I understand that treatments for cf have come very far within the past years. another common sign is runny bowels. or many a day, they smell very strong also. also cf patients sweat a lot. and there skin tastes salty, especially when they sweat. my daughter is on pulmacourt 2x a day, x
openex 2x a day, an enzyme to absorb fat she takes that with every meal and snack ( they are very important), vitamax once a day, zantac 2x a day. it is a lot of meds but she is very healthy. each time we go to the doc her lungs are very clear. cf patients don't absorb fat unless they are taking the enzymes that is why there bowels are runny if not on meds. and the vitamins they take are water soluble so they absorb with water instead of in fats. i have learned a lot in the past few months i had never heard of the disease until i found out she had it. i am just so thankful that her lungs are nice and clear. we just have a hard time getting her to gain weight. she is 21.5lbs. she has to drink 4-6 pediasures a day to make sure she gets enough of everything. sometimes she eats good and other times she doesn't i think it has a lot to do with her age being picky and all. because before we knew she had cf she used to eat everything you gave her and she would eat all day that was because her body didn't absorb the fat. I just recently had a baby boy and we found out that he is only a carrier of cf which we are very happy about
because 1 out of 4 in each pregnancy could have the cf disease, which i didn't know till we found out she had cf.
I hope this information helped you out i hope everything goes well. kepp me posted on the results.