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http://www.rarepatientvoice.com/sign-up/ For those of us who are cf parents or those with cf, you can sign up to take surveys and get a $10 gift card (amazon, Starbucks, or dunkin donuts), just for signing up. Looks legitimate, so I thought I would pass it on. If you put my name down, I can get...

I have an 18-month-old son, 24 lbs., PI, severe reflux that we control with a couple of medications, chronic constipation that we control with Miralax. None of this has changed in several months. Same medications. Slightly different doses as he's gained weight. At our last clinic appointment...

My 15-month-old has cultured something called Enterobacter Aerogenes off and on for the last several months. The clinic gives him antibiotics (Bactrim, ugh) only when he has symptoms (i.e., coughing since his baseline is no coughs), but doesn't seem to be all that concerned about this bacteria...

I have a baby who is 11-months-old (almost 1-year-old) who was diagnosed when he was 12 days old and was started on enzymes immediately. Up until the last two weeks, he would take is enzymes like a chance... 4 Creon 6000 opened up and sprinkled on applesauce. Now, for the last two weeks, it's...

My husband and I are first-time parents to a beautiful 6-month-old boy with CF. We'd like to have more children, but coming off of our first hospital admission last week, we have a question for those of you with other children (either with CF or not).<br>If your cf child is in the hospital and...

I have a 5-month-old diagnosed with CF when he was born. Our clinic has us doing manual CPT on him once a day for 20 minutes. They keep saying they won't add a second time until he starts coughing during it.<div><br></div><div>Does this sound right? Everything I'm reading says twice a day is...

Hi again - <div><br></div><div>Our now one month old was just put on vitamins. (Starting with a half dose of 0.5 mL, going up to 1 mL.) We've been putting it in a bottle along with the salt. (He is breastfed, but gets one bottle a day that his father gives to him that contains the salt and now...

My newborn son was diagnosed with cf last week. (He's 17 days old today.) We're still completely in shock, but we're doing our best to get his treatments started and under control before I have to go back to work in a few weeks.<div><br></div><div>At the hospital, they gave us enzymes to mix...