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http://www.cff.org/aboutCFFoundation/NewsEvents/6-24-Vertex-Phase-3-Results-Lumacaftor-Ivacaftor.cfm

I signed up as well and gave a referral to Amanda....My email is rebjane30@yahoo.com if anyone follows this and want to use me as a referral! Thanks

Personally I would not worry about it. The only reason I would was if someone has a compromised immune system like cancer actively going through chemo; or HIV or has CF.

Off topic. But I'm pretty sure our grocery store clerks think I have some weird eating disorder. I am in the store every couple days buying Whole milk, meal replacement protein bars, pretzels, and of course diet coke and low sugar popsicles(so we adults can have a sweets, too) Oh and the...

Does your son see a dietician? They usually have free samples of high calorie shakes made for weight gain as well.

This is a good question. An idea is to increase snacks between meals(sounds weird I know) For example; there are MANY protein bars(some are higher calorie than others) some have the calories of a small meal. Eating those between meals is a way to increase calories. I let my daughter salt...

Thanks. She is not dehydrated; she always drinks tons of fluids. I hope it's not the polyps..that's why I am reaching for other causes..sigh. She is on daily Nasonex.

My daughter 11 with CF has been complaining of daily headaches, starting about 1 and half weeks ago. No other symptoms.. She is relatively healthy right now; no cold symptoms or illness. She has been irritable; not sure if it is because the headaches or vice versa. She does have nasal...

That's wonderful news.

I guess where we would move would depend on our decision suburb vs city. We lived the city life many years ago. Never did the suburbs...Good schools are a priority as well as having a lower cost of living, so perhaps we'ld lean toward the suburbs. We plan to visit the area in a few weeks if...

Thanks for the great info! I figured the school would be air conditioned. My daughter overall is doing well with her CF so I hate to rock the boat with transfer of care and going to a new school environment, etc. My daughter with CF is an extremely high achiever (as is my son in high...

Looking for some info about Houston TX and how things are in the hot humid climate. My daughter is 11 with CF; would be middle school..We are thinking about a relocation which is job related. Lots of questions. 1. are the schools air conditioned? 2. who is a good CF doc at the Baylor CF...

My daughter with CF does not always have salty skin; when she was a newborn she did; as a tween I don't notice it; I don't go around licking her however. In general CF babies kids are underweight and have failure to thrive though not always. Family history does not matter. My daughter is the...

Fel, Bowel issues are common and known by CF specialists. I copied and pasted this right from the Cystic Fibrosis Foundation's website. http://www.cff.org/Adults/GI/Basics/GIMedications/ Bowel obstructions are nothing to mess with. My daughter with CF was born with a meconium ileum...

How old is your daughter?

aboveallislove, I took it as it is another way of administering breathing treatments. I do not know a whole lot about it; that's why I'm asking :)

sue3582, Call customer service at Hill rom. The rep had mentioned it about home use; not sure if it is currently available but I plan on talking with my daughter's CF doc about it. She has never used it before so not sure if she needs to yet...

How is it different from doing neb treatment with a regular compressor? I am asking because Hill Rom may be providing it for home use?

http://www.hill-rom.com/usa/Products/Category/Respiratory-Care/MetaNeb-System/

Nutella by the spoonful and or dip pretzels, apples in it. oatmeal with added flax oil brown sugar and butter. chicken nuggets and french fries. mac and cheese. cheetos. beef jerky. steak with A1 sauce. To get your child to drink more use a fun cup and a fun straw. At one point I even...