Re: Need some advice

[Guest guest]

,

Thanks for the reassurance and advice. I did talk to her docs, and she had

another upper GI done on the 4th of this month. We found out that she is not

refluxing, but that she has a para-esophageal hernia. Luckily the hernia is

very small right now and will not require surgery. Her surgeon wants overnight

feeds with the pump, but her pulmonoligist said no way!! We do 5 or 6 bolus

feeds a day and she seems to be doing better, I think her gagging was more of a

volume thing, so we increased her calories and give her one ounce less than

usual at a feeding. I don't know how her weight is, but she goes for clinic on

the 10th of July. Thanks again for the advice and reassurance!!

Katy

Mom to Austin almost 4 w/o CF & Piper 11 months w/CF

ANDREA FITTING wrote:

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