Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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Weight issues

deleted_user
deleted_user
My daughter is three years old. She weighs 28 pounds and is 39 inches tall. her doctors keep telling me she is under weight and under heigth. But she looks average size to all the other three year old kids I know that don't have cf. She eats more than my five year old does but she just don't gain much weight. They have been wanting to put a gi tube in. I don't want them to because all of the people I have talked to said their kid doesn't eat as much by mouth since having one and that they haven't gained that much weight either. Any suggestions on how I cann get her to gain some weight?
deleted_user
deleted_user
have the doc's tried scandishakes yet? They're like, 600 cals per packet and my 3 year old loves them. My little one weighs 28 lbs, too, and her doc said that she was right on track. But it's good for you little one's doc's to be tough on the issues. It's actually hard to find that. Have you told them your thoughts and fears? Doctors are trained to listen and use parents as their first resourse for what's going on with the child and what treatments would be best. Let them know how you feel about it and vent your anxieties about this issue beofre going through with it. Best of luck to you
PS
I add extra butter to Lilli's veggies after cooking them and give her plenty of dairy foods like yogurt (not low-fat) cheese, whole milk, and ice-cream.
~hugsnkisses
deleted_user
deleted_user
Jaden is 3 and weights 33 lbs and is 40 inches tall and I always get told they want more weight when we go to clinic. She is doing great. I think they really push the weight issue only because when they get sick they need those extra calories to help fight off those bugs. I personally don't let it bug me like I used to. She eats well and we do our best and that is all I can do for her. We use the pediasure and the scandi powder. Anytime she eats something we just try to add extra calories, butter, oil, dressings. She loves ice cream so I always have that and make milkshakes, add the scandi powder to all her dairy drinks. I'm sure your doing the best you can, try not to worry to much. I was offered the GI tube and we talked about it and told them I would work with her if I can atleast gain one pound per visit then I would considered.
deleted_user
deleted_user
I meant to say if I couldn't have her gain atleast one pound a visit, UGHHH I need my glasses, lol
deleted_user
deleted_user
My doctor also told me the same thing. I'm 4"11 and 17 years old and 95 lbs. They asked me if i wanted a tube in also and they were getting to the point where they were going to make me do it. And i cried and cried and said i dont want to be overweight. I like the weight i am. Eventually i gained 10 lbs and was 104 lbs and now im back to 94lbs. I'm not sure how i gained the weight. CFers do have an exsessive appetite and eat more then "normal" people. which is the good thing about having cf =]. Just keep feeding your daughter and keep talkign to your doctor. Maybe she'll eat scandishake supplements?
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