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With all of the bad press that BPA has generated in the news in the past months concerning baby bottles & water bottles, has anyone questioned if it is found in the plastic in nebulizer cups or tubing? Just a thought. I really dont want anything else to have to worry about, but I do think about...

I bought a big trampoline after my son was diagnosed with CF. It's fun and it helps move the mucus around. I came up with a new use for it this year. When we wash towels I lay them out on the trampoline and they dry within 1 hour time if the sun is out. The tarp is black and it really gets...

Has anyone heard an update on the current trial in England on treating Pseudomonas with Garlic? I was about a year ago that I first heard they were testing. They were giving garlic pills to see if it would disrupt or kill the pseudomonas as it worked in testing. What a great thing this would...

My son will be finishing the Denufosol clinical trial in about a month. Our clinic will also be starting the Bronchitol trial in the next couple of months. Has anyone here participated in that study? What was your experience? Sean

Wow it has been a busy month so far. My son has been on the Denufosol Trial, he just entered the 2nd 6th month so we know for sure he is on the study drug now and not the placebo. Also, Nemours asked my family to be in a tv news story about the new drug and new treatments so we just filmed...

Hi, The Cystic Fibrosis Foundation just updated the Drug Development Pipeline section of their web site. There are now at least 12 drugs between the stage 2 and stage 3 development stage. Never before have there been this many. These range from Protein Repair, Restore Salt Tansport, Mucus...

Hi All, Just what exactly is the difference between the Pari LC Plus and the Pari LC Star. From what I can tell, the Star creates smaller droplets than the Plus, which I would think is better because it would allow deeper penetration into the lungs. Which one is everyone else using? When we...

Hi All, Just what exactly is the difference between the Pari LC Plus and the Pari LC Star. From what I can tell, the Star creates smaller droplets than the Plus, which I would think is better because it would allow deeper penetration into the lungs. Which one is everyone else using? When we...

Hi All, I wrote a couple months back that we were going to enter my son in the Denufosol Drug Study. Well we just started the treatment this past Friday. I have noticed that my son is coughing more. It is not the normal dry cough. This is a wet sounding cough, which means the mucus is moving...

For all of you Florida people out there who have Blue Cross Blue Shield PPO, I just got a call from Nemours that they just reached an agreement on a contract with BCBS. Nemours is in network Again............. YEAH....... This will save loads of $$$$$$$$.........It is retro back to Jan 1 as well.

Hi, Just wondering how many people on this site live in Florida. There are a lot of great strides going on soon. Daytona Beach 4/14/07, Orlando 4/21/07 and Sanford 4/28/07. We live in Sanford, this will be the second year we have formed a team for my son. Is anyone else getting involved?

Hi, Just got back from my sons quarterly checkup. My wife and I have been tossing around the idea of enrolling my son (7 yrs old) in the Denufosol Research Study. The treatment time is fairly long (1year) and it requires 3 treatments a day on top of the pulmozyme he is currently on (and the...

I live in Orlando Florida and have Blue Cross Blue Shield PPO through my work. Our annual benefits enrolment period was several weeks back and I have had BCBS for the past few years with no problems, coverage wise, so I just let it roll over. Well of course 3 days after enrolment ended I get a...

Has anyone ever looked into the possible link of Dental Care to Pseudomonas?  I read an article a few years back that said that elderly people in nursing homes can get sick (pneumonia) from not taking care of their teeth.  Their respiratory system gets infected because of the bacteria in their...

Just joined this is my first post so be gentle.  My son has CF (6 years old). I have always understood that the gene had to be passed from both parents for CF to express itself. (although now there have been some studies that have shown that carriers, only one gene, can late in life express some...