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Hello, I haven't been on here in quite a while, but the phone call I received today has my mind thinking in doubletime and I thought this forum may be a good place to seek help. Our 4 year old daughter has overall had a very healthy course so far. She is pancreatic insufficient, has been on...

Hello! I have a question for all of you germ fighters out there! We live in a very tiny home & are very excited to build an addition that will include bedroom & bathroom for our daughter Lucy with CF, she is almost 2. Until now we have been batheing her, making sure to clean the tub prior to...

Hello! I have a question for all of you germ fighters out there! We live in a very tiny home & are very excited to build an addition that will include bedroom & bathroom for our daughter Lucy with CF, she is almost 2. Until now we have been batheing her, making sure to clean the tub prior to...

Hello, Our daughter is now 19 months and loves the outdoors. She had our first big scare a few months ago with a positive pseudomonas culture, thankfully it responded well to a month of TOBI and we had a clean follow up culture. Of course we are always concerned about potential risks that could...

My daughter is now 17 months and has a wide enough chest measurement to barely fit into a vest. We are very happy to be able to start "vesting" because she absolutely hates manual CPT - always has, since 6 days old. The main vests we are looking at include Hill-Rom's "The Vest" and the InCourage...

Hello, My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house...

Hello, my little girl is now 5 months & at her last CF appt we decided to begin hypertonic saline through a nebulizer as a prophylactic treatment even though she is asymptomatic (her lungs sound fantastic). We did the treatment about 5 minutes per day for 5 days & then noticed she had developed...

Hello! I'm having a frustrating time dealing with our insurance company (Regence PPO) on covering the RSV antibodies called Synagis. Does anyone out there have a recommendation or experience in this area? We are just beginning the second & final appeal. An attorney I spoke with recommended...

So, Lucy is almost 11 weeks & so far is very healthy. She has pancreatic insuffiency, but is gaining weight nicely with breastfeeding, taking enzymes, multivits, salt & Zantac. Yesterday at our CF Clinic appointment, the pulmonologist talked about starting her on Pulmozyme and or a hypertonic...

Well, here goes. I found out that I was a carrier of CF when about 12 weeks pregnant, my husband was then tested & he was also positive. We opted against an amnio or CVS because we knew we wouldn't terminate & after talking in length with physicians we respected, felt we could handle the wait. I...