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Are enzymes needed with these? I know they are fat free but they do have protein in them. I have gotten differing opinions so I thought I would ask the nutritionist!

We got our written report from my 4 year old daughter's birthday visit at the CF clinic. Everything checked out well on her radiographs and bloodwork except they said her vitamin K level was a little low and we need to start a supplement 3 times a week. Is this common?? Are there any foods we...

We are getting ready to start periactin in my 4 year old daughter to try to get a few lbs on her. Has anyone used it?? Did it work?? When you stopped giving it, did your child lose the weight??

My daughter is starting preschool next week. Can anyone give me a link to a handout I can give to her teachers explaining CF?? I have gone over the enzymes with them but I'd like them to understand everything.

We are thinking about buying an air purifier for my 3 year CFers room. She doesn't have any pulmonary symptoms yet and just does the vest 20 minutes a day for lung health. We do albuterol nebs when she has a cold. Do the air purifiers actually help improve lung health?? I know stuff like...

My 3.5 year old daughter has been terrible about eating this past week. She is PI but doesn't have any lung disease as of now. She was diagnosed a little over a year ago and pretty quickly gained about 4 pounds. She has now been "stuck" at around 28 lbs for 6+ months. Sometimes she eats well...

I'd love to keep up with other parents of kids with CF who understand and only get on this site to browse or with a question. Is anyone on FB? I am facebook.com/dana.fehr

Which 46 mutations are tested for in the newborn screen??

A friend of mine's daughter's newborn screen (IRT) came back elevated in her now 10 month old. The sweat chloride was normal (don't know the number), so they did not pursue it. They were told at the time she was likely a carrier. They are now planning for future children and wanted to make...

My daughter was diagnosed after my son (11 months) was born. His newborn screen (IRT) was zero and his sweat test was negative. He is in the 90th percentile of height and weight and has not had any health problems? I am feeling very paranoid because he has had a cold for 3 weeks and now is...

I don't know if anyone has an answer on here, but my 11 month old non-cf son has a cough that seems to be getting worst and more moist. He doesn't have a fever, so I am going to call the ped in the morning to get him in. Would it be bad to use my daughter's albuterol nebulizer on him to see if...

Probably a silly question, but this is our first walk and I was wondering how we get t shirts. Do you buy them when you get there or get them ahead of time?

My daughter is 3.5 and has never had issues with constipation. She is PI and before she started enzymes she would go 3-4 times a day. On the Creon, she has been going once a day for the past 9 months. 2 weeks ago she did not go for 3 days. The nurse at the CF center told me to give miralax...

My 3 year old daughter was diagnosed last summer shortly after the birth of my son (no CF). She is doing really well and is such a special little girl! My question is, will I always feel deep seated resentment when i find out my good friends are pregnant? I always dreamed of having 3-4 kids...

I just got over a 10 day long horrible cold that ended in a sinus infection that require antibiotics. I am usually pretty tough with colds etc, but this one forced me to take my first day off work in 5.5 years. I thought we were in the clear with my daughter (CF) since it has been well over a...

My 3 year old daughter was diagnosed with CF last July due to PI. She is doing well on her enzymes but is going through a phase where she could care less about eating. I swear, she could probably go a few days without asking for anything to eat. I don't think it is medical related because she...

I got my daughter's report card from the CF Center today. She has no outright signs of respiratory disease with her CF, but is PI. On the paper, it said she cultured staph aureus -- no treatment needed. Isn't this a pathogen?? I didn't think it was normal flora.

My 3 year old daughter has been on Creon since early July when she was diagnosed. She has been doing great on it. yesterday she broke out in hives all over her face. She is still on benadryl because once it wears off a few come back. The ER doctor and my best friend who is a dermatologist...

My 3 year old daughter has a bad cold and is coughing constantly. She doesn't currently have any lung symptoms with the CF, only PI. I have doubled her vest treatments and have been doing albuterol nebs once a day, which she only does when she is sick with a cold/cough since she otherwise...

Is there a brand of humidifier that is best?? I always worry about bacteria colonizing humidifiers in general. Any suggestions??