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My 4 year old daughter is not gaining weight. she hasn't gained a pound since last nov. our physician is recommending a feeding tube for her. i am apprehensive and scared - because i don't know what to expect or if it's the right decision. can you guys tell me what to expect as far as...

HI everyone. I have a 4 year old daughter with CF. We live in California and I was wondering if anyone in CA is receiving benefits through the State or their county? I have heard of something called GHPP - it was just mentioned to me yesterday - the first I'd ever heard of that. I'd be...

I was wondering if anyone had any information on books, other than Mallory's 65 Roses that might help explain more about CF to my 4 year old daughter. She is starting to ask a lot of questions and seems ready for some more detailed answers. IF you have any information or recommendations, I'd...

Have any of you been through the CVS process? If so, how soon is CVS available and do you have any experiences, pros/cons that you can share?

I was reading another post about the enzyme calculation and note that prevacid was mentioned a lot. Is that standard? My daughter hasn't been prescribed that yet. We have been having such difficulty getting her enzymes right. I wonder if that would help us.

I was reading another post about the enzyme calculation and note that prevacid was mentioned a lot. Is that standard? My daughter hasn't been prescribed that yet. We have been having such difficulty getting her enzymes right. I wonder if that would help us.

My daughter has been diagnosed for 1 year and 3 months. This past year has been very rough on my marriage. My husband is having a very difficult time coping with the diagnosis and expressing his feelings about what is going on. Instead of saying he is sad or worried or scared he doesn't say...

My daughter, who is 3, is potty trained, but still refuses to poo in the potty. We had a horrible experience with constipation during potty training, and I tried to sit her on the potty thinking it would help her to move things, and now she associates the potty with painful bm's. In any case...

Have any of you visited Disneyland and looked into the disability pass? We have heard about it from friends with children who had diabetes. If so, what was the process and did it work out all right? We want to go in Dec. but are nervous - our daughter just turned three and was diagnosed a year...

We are planning a camping trip and I'm wondering how everyone deals with doing their pulmozyme treatment while on the road or w/out access to an electrical outlet? We are still pretty new to this and I know that there has to be a way.

Some of you probably already use this search engine, but I thought I'd post it just in case. GoodSearch.com is a search engine powered by yahoo. It will donate .01 per search made on it's website to the charity of your choice. I have the CF Foundation listed as my charity of choice. .01 can...

Hi everyone. We are going on vacation next month - this will be the first time since we started Pulmozyme. How do you guys transport it? We are concerned about how we will keep it refrigerated while going to the airport and flying, getting rental car and finally getting to our hotel to put it in...

We are just about to start Pulmozyme and I was told to do it at the same time every day. When do you all do it and is it hard to stay on such a regimented schedule?

We have only had about 5 clinic visits so far and I am curious about what all of you do at your clinics? My daughter is 2 and 1/2 years. Currently, we see a pulmonologist, social worker, respiratory therapist, nurse and dietician. We do annual blood work and a chest x-ray. We also have a...

I am trying to find out if the various CF Centers are ranked or if there is one that is considered the most reknowned in the U.S.? Do any of you have any information on that?

I am the mother of a 2 and 1/2 year old daughter who was diagnosed with CF 10 mo. ago. We are just starting Pulmozyme and she is doing very well. At our appointment yesterday, we were told that her chest x-ray shows some thickening of the bronchial walls, they are still waiting for the final...