|Nov 22, 2004|
oral feeding suggestions?!Just wondering if anyone has any advice. I have a 2yo daughter w/reflux. She has a g-tube and gets 4 feedings on that each day. She does not eat well orally and has been receiving feeding therapy all her life. We really seem to be getting nowhere with the oral feedings. I don't know if the severity of the reflux prevents our daughter from wanting to eat. I guess I am wondering if anyone has any suggestions as far as any tests or interventions we should talk to the GI team about. She is having a barium swallow study in Dec. Her reflux is really not under control. She is on reglan and prilosec but vomits at least once each day. Today she has vomited 3 times already and this makes it very hard to get her all of the calories she needs. Does anyone know of any specialists who work with transitioning children from tube to oral feedings? We live in Ca. Any advice would be appreciated.
P.S. In the last 6 months when we change our daughter's g-tube the balloon looks pretty dark brown. Should we be concerned about the ph level of her stomach based on that?
|Nov 22, 2004|
Ruled out EE?Reflux that doesn't respond to typical meds is one possible symptom of eosinophilic esophagitis. Have you ruled that out yet? If not, it's diagnosed by biopsies via endoscopy. Check out www.apfed.org for more info. I understand one of the best in the nation for this is ped. GI Phil Putnam at Cincinatti children's. He e-mails back and forth with those who are not even his patients, so maybe you want to run your daughter's scenario by him, get his take? Sounds like she (and you) have had a rough go, and maybe he could help. Good luck!
|Nov 28, 2004|
ThanksThanks for both of your responses. I should have been more specific. My daughter does have slow-emptying in her stomach and that is why she is on the reglan. Although with what we have recently been reading about reglan we are deciding to try to wean her and see if she can manage without it. She is down to only 1 dose (from 4) a day and it does not seem to have caused any changes. I have never heard about EE and plan to ask the GI doc. The NP at GI told me that we can request an endoscopy in January if things continue as they are, but I am not aware of all of the conditions this would look for. Hopefully between the swallow study in Dec and an endoscopy we can figure out what is going on. Thanks for the info.
|Nov 28, 2004|
Jan Gambino Burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
I wonder why your little one is still vomiting while on medication. I wonder if she is getting the right dose of medication. I also wonder if she had delayed gastric emptying. Some kids have reflux/vomit because the food stays in the stomach too long. this condition is also called poor motility or gastroparisis. You may want to look elsewhere on the site or do a google search. Do you notice that there is still food in her stomach for a long time after a meal. this is fairly easy to check with a tube. also, do you vent her tube before and after a feeding. I found that my daughter managed to capture a whole lot of air in her stomach and she felt full. If i released the air first, she could eat a lot more.to vent her, I would place her on her back and open the tubing. there would be a small to large release of air.
Regarding the color of the balloon. We changed the MicKey button every few months. It would look pretty brown and ugly if it had been in for a few months. some insurance plans only give you a few spare buttons. we could get one per month. I tended to change it pretty often because it was easy and it prevented any surprise balloon failures.
Let me know if I answered your questions. I would be happy to chat with you further about the tube. Maybe there are others on tubes out there too? I learned EVERYTHING about the tube feeding from other moms.
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