Does Anyone Have Experience With an Infant With Cystic Fibrosis?
Saturday, September 4th, 2010 at
6:53 am
bizzurke asked:
my one month old was diagnosed with cystic fibrosis this week…and i was just wondering if anybody had any experience with an infant or just anyone who had it. like…what are difficulties you have face and what not?
thanks <3
Tagged with: Cystic Fibrosis • Face
Filed under: Cystic Fibrosis
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Yes I do my daughter is 8 months old and was diagnosed when she was a week old. She takes viatamins once a day, she also has to take enzymes before every time she eats, and we have to add salt to one of her bottles or food. For her condition she is actually in really good shape but you have to take it every day one day at a time because the doctors will never know how mild or severe of a case your child will have. They will tell you that you just need to do what they tell you to do. For the three months we went once a week every week. They will check your childs weight height and breathing. They will talk to you about their eating habits and their stools so you have to pay close attention to that kind of stuff. Also the baby will cough and sneeze maybe a little more than usual due to the fact that they need to help clear their lungs out. I think the biggest difficulties are that its alot of work and that its hard to think people with this disease are only expected to live up until they are 38. But I will keep your child in my prayers and if you have any questions or concerns feel free to email me at even if you just want to vent because i know from experience this is a difficult situation that unfortunately some of us have to deal with but best of luck.