Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Hi Katy, I know that most people tell you that all kids with CF have ravenous appetites but it is not necessarily true. My daughter is four with CF and she had horrible reflux. I think that she connected eating with the reflux as an infant and ever since it has been a struggle to get her to eat enough for an average kid let alone a kid with CF. (we are still not at that point yet) has a g-tube and had a nissan too. If your daughter is able to bring up food she probably " broke through " the nissan, did this within about 8 months of surgery. Tell the docs!!!!!!! I don't know how you have been told to do the feeds but at first we did 3 boluses a day rather than one big overnight feed. I was uncomfortable with the idea that the feeds would be going in unsupervised. If you are doing overnight feeds go call the doc right away about the possibly " broken " nissan because she could aspirate in the night if she refluxes in her sleep. She could cause herself serious lung damage if she breathes in the refluxed spit-up. Luckily, 's reflux has decreased in the last few years and she doesn't have to take any reflux meds right now. This can happen too! This probably hasn't helped much but at least you know others have been through the same thing. Need some advice Hi, My name is Katy, and my 10 month old daughter had CF. I have noticed the past couple of days, she hasn't been acting very hungry. In November she had a Nissen and a GT button placed so that we could do supplemental feeds, but lately that is the only way she is eating. Is it normal for CF kids to lose their appetite? Even though I am feeding her through her button, she is starting to reflux, and has even began spitting up again. She is maxed on her dosages of Zantac and Reglan, and I don't know what to do. If anyone has any insight to this problem, let me know what you think. Thanks, Katy 23, mom to Austin 4 years no CF & Piper 10 months with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 How hot is it where you are? When the weather turns too warm for her (this is around 78 degrees) she quits eating. She will also not eat if she is low in electrolytes. We keep gatorade and pedialyte on hand for this. Hope this helps... Dawn mom of 4, 7 and under, the youngest wcf Need some advice Hi, My name is Katy, and my 10 month old daughter had CF. I have noticed the past couple of days, she hasn't been acting very hungry. In November she had a Nissen and a GT button placed so that we could do supplemental feeds, but lately that is the only way she is eating. Is it normal for CF kids to lose their appetite? Even though I am feeding her through her button, she is starting to reflux, and has even began spitting up again. She is maxed on her dosages of Zantac and Reglan, and I don't know what to do. If anyone has any insight to this problem, let me know what you think. Thanks, Katy 23, mom to Austin 4 years no CF & Piper 10 months with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Dawn, We live in Arkansas and it had been in the mid 80's this week, and she is rather hot natured. Thank for the info about the electrolytes. I will definately try some pedialyte for her. Thanks again!! KatyMom to Austin 4 yowocf & Piper 10 months w/CF & Dawn Meeks wrote:How hot is it where you are? When the weather turns too warm for her (this is around 78 degrees) she quits eating. She will also not eat if she is low in electrolytes. We keep gatorade and pedialyte on hand for this. Hope this helps... Dawn mom of 4, 7 and under, the youngest wcf Need some advice Hi, My name is Katy, and my 10 month old daughter had CF. I have noticed the past couple of days, she hasn't been acting very hungry. In November she had a Nissen and a GT button placed so that we could do supplemental feeds, but lately that is the only way she is eating. Is it normal for CF kids to lose their appetite? Even though I am feeding her through her button, she is starting to reflux, and has even began spitting up again. She is maxed on her dosages of Zantac and Reglan, and I don't know what to do. If anyone has any insight to this problem, let me know what you think. Thanks, Katy 23, mom to Austin 4 years no CF & Piper 10 months with CF Quote Link to comment Share on other sites More sharing options...
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