Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 My grand daughter also has CF and reflux. She had a hard time eating and vomited frequently, when she was an infant. We later learned that she was asperating some of her formula into her lungs. She is now on Zantac, and Prevacid. We must thicken all of her liquids. We only feed her in the upright position, don't feed her too close to bed time and have stopped the upside down PD's. This has all helped. The reflux irratates the asophagus and can lead to swallowing difficulties. I hope that you figure out what to do for your son. I know that it is really hard on you. Good luck, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Gale, You know I really hope they figure out something too. I think that sterness is going to get us there this time. I have just been thinking that the doc's must know what they are doing. They do, but they do not know our babies like we know them. As far as PD's I have never been able to do upside down ones. He is still so small it is hard to get him to work with me and he vomits all of the time during treatment anyways. I was afraid of aspirations also. Thank you I hope that your grandaughter is doing well. Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Ashauna, Have the doc's mentioned doing a Nissen Fundoplication? Piper had severe reflux so much so that even thickened formula still came up. They did her Nissen in November, and the last GI scan that they did showed no signs of reflux. The Nissen is surgery and does require a hospital stay, but the long term effects are great. The weight gain improves and the child is happier, in less pain as before. Just a thought. Katy Mom to Austin 4 no CF & Piper 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Katy, did piper have the gagging problems after the nissan? had a terrible time with it. And it took forever to get her to eat again. Re: Ashauna Ashauna, Have the doc's mentioned doing a Nissen Fundoplication? Piper had severe reflux so much so that even thickened formula still came up. They did her Nissen in November, and the last GI scan that they did showed no signs of reflux. The Nissen is surgery and does require a hospital stay, but the long term effects are great. The weight gain improves and the child is happier, in less pain as before. Just a thought. Katy Mom to Austin 4 no CF & Piper 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 We didn't realise that Abby was asperating into her lungs and she developed pnuemonia. Since she wasn't diagnosed with CF yet, the pnuemonia wasn't treated agressively enough. She got a little better and was released from the hospital. Within a day, she was having trouble breathing and was back in the hospital with pnuemonia again. By this time, her upper right lobe of her lung was damaged beyond recovery. She had to have that lobe removed when she was six months old, because it continued to harbor bacteria. Now, I am always worried about her asperating again. Gale > Gale, > You know I really hope they figure out something too. I think > that sterness is going to get us there this time. I have just been > thinking that the doc's must know what they are doing. They do, but > they do not know our babies like we know them. > As far as PD's I have never been able to do upside down ones. He > is still so small it is hard to get him to work with me and he vomits > all of the time during treatment anyways. I was afraid of aspirations > also. > Thank you I hope that your grandaughter is doing well. > Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Gale, I bet that you were devastated to have to go through all of that. Poor little Abby. I will never understand why these precious people with the awful disease have to suffer so much. My son Colgan has not had near that experience and I hope never, but that seems like too much to ask with this road that we all ( well really our babies and our friends the parents who also have this disease ) are on. Sometimes I get so angry that anything like this has to exist even. It makes no sense that something as weird as it can exist but as of yet its cure is nowhere to be found. One day I believe that it will be I just hope and pray that each and every one of us are here to see that amazing day. What a day that will be I guess that I am rambling. I think that I am just having one of those days. I hope that Abby is feeling good tonight and you too Gale. Ashauna Quote Link to comment Share on other sites More sharing options...
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