Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Thanks for sharing 's experiences with GERD. My daughter Kate (4 yowcf) has recently been diagnosed with reflux. She had a nagging cough that wasn't responding to treatment. So, her doc performed a bronchoscopy and her culture revealed the presence of fats (evidently only possible through aspiration of stomach contents - although she never barfed or complained of heartburn, etc.) So, now she's on reglan and prilosec. Here are my questions - and please just point me to the archives if this has already been discussed (I just joined this group yesterday) - does have any side effects from the reglan? How long has been on reglan? Does your doc have plans to try surgery again? Kate has had a lot of restlessness when she's at the prescribed dose. I reduced her dose and have been gradually increasing it. Now, she's not as restless, but she does get sad a little. And she also has more gas and bloating than usual. After reading about this drug, I really want Kate off of it as soon as possible. But it seems that most CFers either stay on reglan or have surgery to mend the LES. Thanks for your input, Jane Lindrum Mom of Kate - 4 yowcf Reflux info Hi, I put up some reflux related info on our site since it has been such a topic of conversation lately. the new page is titled " GEDR (reflux) " I'm trying to put stuff up on out site to help others. These are the experiences we have had with CF/Reflux/g-tubes/picc lines........ If you are interested check out. http://groups.msn.com/TeamJane You can ask me questions about any of it through the message board there or here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hi Jane, doesn't seem to have the side effects of the reglan too much. is a bit over active. OK, she is sometimes so active that I suspect that she might have ADHD. She had been on the reglan for about 2 yrs, then we took her off all reflux meds. She did well for a while but then began coughing. She went back on the zantac when we decided it wasn't allergies and started back on the reglan about 2 weeks ago. I do not plan to let them do the surgery again. I honestly do not think that her doc would suggest it-he is well aware of how I feel. We had a tough time after surgery getting her to eat. I think the nissan may have been wrapped too tight-though it is supposed to loosen up after a while. was kept on the reglan after the surgery. We had an awful time with gagging after the nissan was done. doesn't have more gas or bloating from being on the reglan. Actually it seems that since going back on the zantac her gas has been less frequent and less...ummmmm.... aromatic than it was when she was off of it. Reflux info Hi, I put up some reflux related info on our site since it has been such a topic of conversation lately. the new page is titled " GEDR (reflux) " I'm trying to put stuff up on out site to help others. These are the experiences we have had with CF/Reflux/g-tubes/picc lines........ If you are interested check out. http://groups.msn.com/TeamJane You can ask me questions about any of it through the message board there or here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hi Jane, My daughter Emma, 3 years olds, has reflux as well. I thought it might help if I shared some of her experiences as well. Emma was initially diagnosed with silent reflux. It is called silent reflux because she wasn't vomiting at all at the time, she just slowly over time started eating and drinking less and less and less. It took her a while to get diagnosed with the reflux but I kept pushing the issue and they finally tested her. At that time she was put on Zantac and it really didn't seem to do much for her. She was eventually hospitalized for not eating or drinking at all and at that time they put her on Prilosec and Reglan. Well, she started eating again and along with it came vomiting, lots and lots of vomiting. Despite all of her vomiting, Emma slowly started gaining weight. We have been through some very rough times with the vomiting. It goes up and it goes down. We've had periods of time where she throws up at every single meal. She did that straight for two weeks and I finally had to take her into the hospital for fear of dehydration, they gave her some ivs and she was fine. Right now we are somewhere in the middle. She throws up every few days. Our experience with Reglan was not very good. Immediately when they put her on it, she started vomiting. It was also when she started eating again so we didn't know if it was the reglan, prilosec or the food causing the problems. Well, at one point her vomiting got very very violent. She was throwing up everything and she would start within two bites of food at her first meal of the day. At that point, I decided to see if the problem was related to the Reglan. I looked at the adverse experience list for it and found that vomiting was listed as a possible side affect. So ... we took her off it. We immediately saw a change. She was still vomiting but not as violently and not as often. Her doctors kept insisting we try it again since she definately has problems with her stomach emptying and it would really help her if it actually worked. Every time we have tried, the same thing happens. We have also tried Bethanacol which is another drug in that same class of drugs to help the stomach empty faster. It produced the same problem. So for Emma, this class of drug sems to make her vomiting worse. It is my understanding this only happens to a small number of patients but it can be a side affect. Emma is currently on Prilosec and Zantac. We have to constantly adjust these meds because her vomiting frequency tends to change rather quickly and once we have a problem, it's hard to get it back in check. She was on just Prilosec for a long time and it was much more difficult to control her vomiting. The combination of Zantac and Prilosec has really helped Emma a lot. Hope this helps! Good luck with all of it. - mom to the butterfly girls Emma 3 years old w/cf and reflux and Isabelle almost 5 wo/cf ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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