My daughter was born at 35 weeks, and had a major onslaught of medical issues that resulted in her being on the ventilator for the first 8 weeks of her life. at week 10, we came home with her on oxygen and a feeding tube. at first she did quite well learning to eat, but in the past 4 weeks has developed severe reflux.
she is now on a full tab of prevacid, and refuses to drink from the bottle. i don't know what to do, she will hopefully see a feeding therapist this week. i feel like she is still in pain, but have been told that there is nothing else she can be on medicine-wise for reflux. i really feel as though the pain management would help her reflux, but i don't know what to ask for or what to insist on.
she is a complicated baby and i can't just start trying random things, or even try a new doctor. she sees the only neonatalogist in the area. i just feel like i need more ammunition and the right questions to get some help for her.
Hello and welcome to our support community!
It sounds like you have had a full medical education in the last 10 weeks. I hope you have some family and friends to help you during this busy time.
It is worrisome that your daughter is struggling with feedings despite a high dose of Prevacid. Is she using a Nasogastric tube (NG) or a Gastrostomy (G tube). A NG tube may be somewhat irritating and cause her to prefer to to suck/swallow. I know it is not supposed to affect feedings but it can give an odd sensation in the mouth/throat.
I would encourage you to speak to her pediatrician and neonatologist about other causes of the feeding discomfort. Certainly the feeding aversion may be from the rough start and need for ventilation. Make sure the doctors have ruled out other causes such as food allergy/intolerance. Ask about positioning (elevating the sleep surface) and thickening feeds, two other common GERD treatments. I think it is a great idea to see a feeding specialist too. If the feeding problems persist, it is time to seek the opinion of a pediatric gastroenterologist.
Keep in touch,
Jan Gambino
The Reflux Mom
we do elevate her all the time, she has not been level in 6 weeks.
we also have her on an NG, she has been on one since coming off the vent. she was not averse to feeding until 3 weeks ago when the reflux started. that's what is hard, we were almost there, almost able to accomplish something and then reflux started.
thanks for your tips.
rhys
Hello! Oh I know...reflux is so unfair! While the reflux is a big issue right now, it is most often highly treatable and can be managed. It might take some time to sort out the symptoms and find a treatment approach that works. The diagnosis phase is the biggest challenge. The treatment phase is much easier. I hope you start moving toward the treatment phase very soon.
Sometimes an ordinary illness triggers the reflux or triggers a worsening of reflux. Other times, the backwashing that has occurred all along starts leading to irritation of the esophagus and thus the pain response.
Keep in touch.
Jan Gambino
The Reflux Mom