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    Adult clinic in LA

    Hey gang, My daughter will be spending a semester out in LA this fall. Does anyone have advice for us about what clinic to contact while she is out there? We are from the east so have no clue. Thanks!!! Shay
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    how to get a new Altera handset

    Hey guys, Our daughter is in need of a new Altera handset but we are not using it for Cayston and so don't get a new one with Cayston delivery. She is using it for her Colisitin. My question is how is the best way to get a new handset?? They are quite expensive and it is not covered under our...
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    Living Today, Adding Tomorrows

    Hey all, The Cystic Fibrosis Foundation has a new video series to raise awareness called "Living Today, Adding Tomorrows". My daughter was featured in the most recent release, so being the proud mama that I am:o, I thought I would share it with the group. Here you go...
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    Inpatient respiratory care

    Hi All, I am working to improve infection control procedures at my daughters hospital and I would love your input. At home, after every treatment, we clean the respiratory equipment with dish soap and hot water, rinse, then use the AVENT sterilizer to sterilize the nebs, and air dry them on a...
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    University of Pennsylvania

    Hi Everyone, My daughter's pediatric CF clinic is in quite a turnover phase with much of the staff, including her physician. Since she is almost 18, we are considering transitioning to the adult clinic at the Hospital of the University of Pennsylvania. I would love to get feedback from those...
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    traveling with vest

    Hi everybody. My daughter and I will be traveling by plane this summer. I was wondering what the baggage policy is for her Smart Vest. It packs up into two black canvas bags. Would these be counted as a carryons? I am wondering how we will get purse, laptop, and Smart Vest on the plane. I...
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    Trouble with Trio neb

    Hi Everybody, Just looking for advice here. Our family has had a change in insurance coverage and our new insurance is requiring us to get our daughter's inhaled meds through Walgreen's Specialty Pharmacy instead of from Foundation Care Pharmacy. Now Foundation Care will not allow us to keep the...
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    Neuropsychiatric events with Singulair

    Hi everybody, I am mom to a 15 year old daughter with CF. She has not had an easy path with her CF so far although I'm certain some have had a lot worse. But at 15 she has a port (usually on IV antibiotics 2-6 weeks/year) and has CFRD. She also had a gtube from age 5-14. Even with all those...