My oldest has reflux and significant DGE. She has taken erythromycin with limited success. We recently increased it, and she's having a horrible response (stomach cramping). She can't take Reglan. She won't get approved for Cisipride because she has a heart defect. I'm wondering about Zelnorm. Anyone here have any experience with it? We are ounces away from a feeding tube, so we are desperate:(

Hi Kelly, sorry I have no clue. I did forward your question onto Roni, maybe she knows. Being so close to tube feeding is scary, I know.

Best wishes
Jean

HI Kelly,
My son Justin was on zelnorm for over 4years and had no problems with it. I cant say that it worked and cured him but did make a difference in the begining. He is presently on domperdione which is not approved in this country but he is on a study for it. I do hope that if you use zelnorm that it will help.


Melanie

Hi, I am so sorry you are having such a hard time treating the DGE. How about Bethanechol? We used bethanechol and erthromyicin at the same time, maybe you could try both of those options?? (hugs) I know how frustrating it is!

At what point do they determine a child or infant needs a feeding tube? When you say ounces away, where is she on the chart?

And by the way, my son isn't growing well either right now for the same reason but we haven't tried meds yet. I will be waiting to hear about zelnorm as I wont try reglan. My daughter Chelsea had the same reaction to erythromycin and had bad side effects to Reglan. Why isn't domperidone available here? Has it ever been??

At what point do they determine a child or infant needs a feeding tube? When you say ounces away, where is she on the chart?

For Maya, it has as much to do with her overall health and demeanor as it does with where she is on the chart. Right now, she is hovering around the third, which in and of itself is not something new for her (born at the 97th%). However, it is clear that she is not taking in enough calories to truly thrive. She's getting infection after infection, is tired all the time, beyond cranky, etc. We are having an extremely difficult time getting her to eat anything at all.

Why isn't domperidone available here? Has it ever been??

It is available through limited access programs. I'm not sure of the real reason it is not available here, though.

Poor little Maya. I can say that Zelnorm worked for a week and then never again with my experience. I have no idea if it is approved for children and/or what the results may be.