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2 small boys with CF

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Cystic Fibrosis
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Posted 12/7/2009 12:27 AM (GMT 0)
I haven't been on here in a while but im back.   A little background.  I have two boys with cf 3 and almost 2.  Oldest had pyloric stenosis at two months but no major incidents after that.  Youngest had rough first year.  He had Nissen and g tube at one month.  Had gj placed at about five months due to not able to keep food down.  Had pnemonia twice already.  Has had more than a dozen procudures already.  He is finally growing rapidly.  Oldest finally got a g tube placed in March.  They are both on pulmozyne, albuterol, viokase powder, vazobid, youngest zantac, oldest prevacid and periactin for appetite stimulant.  HOwever the oldest still will not eat.  They keep doing EGD's and noticing that he has reflux so we increase meds but he still won't eat.  DOes anyone else go through this what can I do?
Posted 12/7/2009 8:15 AM (GMT 0)
Hi Jillian,

Welcome back to the forum!

I don't know much about CF but wanted to tell you something I experienced with acid reflux. about two years ago, I couldn't eat and sometimes couldn't hold even a sip of a drink down. My GI doctor found a growth and I also had problems with that little flap that opens and closes to control the amount of acid that goes into the stomach. I had too much going in so the little flap had to be tightened. It did help a lot. My appetite came back and I felt much better. Before they figured that out though, they kept giving me more medication or changing my medication. I know this might be shooting into the wind so to speak, but it might be something to look into.

Poor babies:( I sure hope they both get to feeling better soon.
Posted 12/21/2009 8:17 PM (GMT 0)

Hi Jillian!

I'm glad to hear your youngest is growing :)

As for the older one, I'm sorry to hear he's not eating. I was the same when I was younger, I would hardly eat and never gained weight. So my parents stuffed me full of the only foods I would eat; Chocolate milk and chocolate pudding :) Obviously it's not the healthiest diet, but it was rich in calcium, I got the dairy I needed, and even the calories. It wasn't a miracle cure, but as long as my parents could get me to eat something that was normally a treat for me, they were happy. Does he have any type of food that he would want to eat whether he was hungry or not? Sometimes what the food is is not the only thing that matters, and fatty foods can be healthy for malnourished children (as I was).

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