Re: Cystic Fibrosis

[Guest guest]

Welcome Robin!

I have a nineteen year old girl with cf, and a 21 year old boy, Nick,

(young man?) w/o cf. My daughter has been on albuterol since she was about 2

and pulmozyme since she was 8. we were in the study for it. She is also on Tobi

and Flovent, and several oral meds. She used to be on enzymes but we recently

found out she doesn't need them anymore. I don't think that is very common.

This is a great group for chatting so feel free to share anything anytime. As a

lot of people have been saying we really enjoy the " banter " and it doesn't have

to be strictly cf related. I agree with n this is the best cf group out

there. Everyone is really " up " and of course sweet and nice!! But even if

things aren't going well you can share it here, we all have our days we'd like

to throw the damn nebs and vests out the window along with the meds but we stick

with it hoping to keep our kids healthier as much as we can.

Welcome again it is great to have new people. Welcome to any other new people

who've recently joined up, we seem to have new people every day and it is great!

BTW, was my daughter's best friend w/cf who sadly passed away 5 yrs ago

at age 15. Love the name still.

lots of love to all,

M

Cystic Fibrosis

Hi my name is Robin,

I have a 8 year old with CF. We have had alot of hard times.

She does the Pulmozyme and the Albuterol.

I would love to hear from anybody. I do enjoy chatting!!! I would

love to exchange stories. Email me at any time would love to talk.

Robin

[Guest guest]

I too have an 8 year old girl with CF. Where do you live? When was she

diagnosed?