Recent content by schmj4910

There is a Facebook group called "CF Supplies" where people can list meds or supplies for sale or to give away free for shipping cost. I have given away quite a bit in that group and everything went smoothly. First, you have to join the group. Then, list your stuff. When you have an...

www.feedingtubeawareness.org I "liked" Feeding Tube Awareness on Facebook and I love it! I have learned a lot! And you don't feel so alone after reading other people's posts.

Thanks for all of the replies. It's great to be able to share experiences! I'm thinking a proactive monthly clean-out may help. We had kind-of been doing that for awhile and I want to get back on a schedule. I hate this solution...it's hard to find 3 days in a row to just sit around by the...

Really, I think the whole bowel obstruction thing builds up over time, rather than in just a day or two. So, I will go back about a month before the BO (bowel obstruction). He started saying his tube hurt. The tube site was red, raw, and leaky...no amount of our usual creams (Desitin...

We use the Waterpik Sinusense Water Pulsator for our 3 1/2 year old son. We've been using this kind since he was 2. We pretend it is a rocket ship and say, "3..2..1..Blast off". He likes that. We use 0.9% Sodium Chloride because we can get our insurance to pay for it, but we've also used the...

Hi! Thanks for your input! Yes, we were followed by Surgery throughout the hospitalization, too. At first, they were concerned that his intestines had twisted, then they talked about scar tissue. But in the end, they narrowed it down to a blockage at the valve where the small intestine meets...

Yes, the day before we took him in, he wouldn't eat anything and had severe stomach pain. But he has had a lack of appetite for the past 2 1/2 years. He has never been hungry, and certainly not like this. Could an obstruction have been building for that long, despite periodic Miralax...

My son (3 1/2 years old) recently had his first bowel obstruction hospitalization. He had the meconium ileus surgery at birth and has battled with constipation his whole life, which we've always dealt with at home. This time it snuck up on us...no constipation warnings. Anyway, so we got him...

I just found this great site: http://www.feedingtubeawareness.com/ You can also "like" Feeding Tube Awareness on Facebook. The moms have great advice. It's nice to read about other people who are dealing with the same things as you are. As for your questions, I'm not much help. We have a...

Thanks for the hug! Yes, he usually will drink, even when he doesn't eat.

Yay!!!! Congrats!!!! ;)

So, we had the endoscopy and bronchoscopy done about two weeks ago. The bronchoscopy went really well...nothing in there at all! Yay! :D The endoscopy came back with a diagnosis of Eosinophilic Esophagitis, which is allergy cells in the esophagus causing inflammation. GI doc thinks this is...

No, it didn't just come out. It was around a few years ago, then pulled off the market by the FDA. It was called Pancrecarb. Our son was on Pancrecarb as a baby and did well, so we were excited when it came back out. Unfortunately, we haven't noticed much benefit since starting it again...

Thanks for the replies! I got in contact with his CF team today. It turns out there was some miscommunication between clinics, that's why no one got back to us sooner. Yes, they did file an appeal for the Lansoprazole...couldn't get it approved today though...so I ended up just purchasing...

My son started swallowing pills in early July. Yay! So we had the bright idea to try to get his reflux med in pill form (rather than liquid) for convenience purposes. He went from liquid Lansoprazole to Omeprazole pill. Insurance wouldn't cover Lansoprazole in pill-form. Nine days later he...