Search results

  1. C

    Am I overreacting?

    I picked up our little CFer yesterday from our childcare provider (a family member). When I got there, our little guy was drinking out of one of the other kids cups. I grabbed it from him. I didn't really say anything because it gets tricky because it's family. I was pretty upset about this and...
  2. C

    VX-770 - APPROVED!

    For those of you this helps - congrats! For those of us 508ers - we're halfway there!
  3. C

    Duocal

    Is anyone using Duocal for their toddlers? We're struggling with increasing his volume and wondering if this is a possible option. He also has a milk allergy, so many of the easier options are off the table. Just wondering if anyone has used this with toddlers. Thank you!
  4. C

    Tube Weaning

    While we have no plans to remove the g-tube, we'd like to get LO to a point where he's eating most of his food orally. <br><br>Has anyone here had issues with g-tube dependency & a successful weaning story?<br>
  5. C

    Quick question

    I have been corresponding with a mom of a 16 month old who is presenting classic CF symptoms - respiratory problems, mucous in stomach & stool, FTT, vitamin ADEK deficiency.  They had a sweat test yesterday that was normal.<br><br>She seems very relieved that it's not CF based on this test.  She...
  6. C

    Happy Dance

    Tobi and a 10 month old has been rough, but today is the last day!<br><br>It will be a very refreshing change to just do 2 neb treatments tomorrow for only about 30 minutes total instead of 3 treatments that take well over an hour!<br><br>Woohoo!!<br><br>In my short time in the CF world, I've...
  7. C

    Need MIC-key help/suggestion & Tobi question

    Our little guy got his g-tube switched to a mic key yesterday and we're in need of guidance.<br><br>For continuous overnight feeds - how do you keep it connected?  Are you taping the extension to the button?<br><br>Does the continuous extension really "lock"?  The sample they showed us in the...
  8. C

    Now that we have a crawler

    Does anyone have any suggestions on hand cleaners for a baby?  Our little guy is crawling now which means much more exposure to germs so I want to clean his hands much more frequently, but don't want to use hand sanitizer all the time.  And, of course, <br><br>Any suggestions for products that...
  9. C

    Pork allergy

    I'm a CF mom and we just found out that our little one is allergic to pork.  Pancreatic enzymes are made from pigs.<br><br>Anyone else have this problem.  If so, what did you do?<br>
  10. C

    Pork allergy?

    During the g-tube insertion, because of the way our LO's esophagus looked, they did some biopsies.  Turns out he has Eosinophilic Esophagitus which is generally an allergic reaction.  We found out soon after that the only thing he tested positive for through skin testing & blood testing was...
  11. C

    Creon

    Our LO has a feeding tube and about the only thing he's getting orally now is the enzyme.  He's been cut off from some likely allergens for over 6 weeks now, but still seems to be having pain in his throat when he eats.<br><br>We were told early on that it could create sores in his mouth if it...
  12. C

    Suggestions

    So, we got the feeding tube, which was supposed to solve all the feeding problems.  Unfortunately, that isn't what has happened.  It's only been 3 weeks, but I'm just as frustrated now as before.<br><br>Currently, we're at a 30 calorie concentration on formula, which he doesn't tolerate for...
  13. C

    Enzymes & Feeding Tube

    Our 7 month old recently had a feeding tube placed.  He's on continuous feeds overnight and is supposed to take 2 enzymes at the end of the continuous feed.  This has been a nightmare - as his belly is full and he wants NO part of take 2-3 bites of applesauce.<br><br>This morning, I forced them...
  14. C

    How powered neb compressors?

    I'm wondering if anyone has purchased a high powered neb compressor?  We've got the standard one that the insurance pays for, but after a stay in the hospital this weekend, we're interested in getting one that is more powerful.<br><br>We currently have the Pari Vios for children, with an 18...
  15. C

    Feeding tubes

    I know lots of you have been here...Collin is almost 6 months old and still just under 13 pounds.  Nutritionist was very enthusiastic about getting a tube as Collin doesn't eat regularly in the volume that he needs for bounceback weight.  Doctor (not my favorite of our clinic) was much more...
  16. C

    Infants culturing for various things?

    Has anyone had this experience? Our little guy has now cultured for this twice in the last 3 months. He wasn't symptomatic when we went to clinic last week, but over the last week, he's started coughing, he's eating less...*sigh* Just wondering if anyone else had some guidance/advice on this...
  17. C

    stay at home or work?

    Our son was born at the end of November with CF. He spent a month in the NICU due to meconium ileus and a subsequent week getting his ileostomy takedown completed. I've gone back to work and my husband also works. My husband's sister takes care of our son during the day which is great, except...
  18. C

    Ostomy bags with infants

    Our son was born with meconium ileus and had to have surgery when he was 2 days old. We spent almost a month in NICU and are home now, but are struggling with the ostomy bag. Any parents here who have had infants at home on the ostomy bags? If so - any suggestions? We've tried just about...
Top