My 20 week old son refuses to eat, has tried zantac, losec and now propulcid and they don't work??
He simply pushes the bottle or spoon away and flat out refuses to drink. We were again 3 days at the hospital after a 14 hr hunger strike and they said he was fine, happy and normal and that we shouldn't be too concerned, even though he hadn't had a wet diaper in 4 days.
My life feels like there is no light at the end of this tunnel. We wanted him so badly, but now just feel lost and trapped. Will he ever be okay? Will any medicine work, or should we resign to the feeding tube some of the specialists are trying to push on us?
Help me please, each feeding session lasts over an hour as he fights the bottle and he only drinks 2-4 ounces every 5 hrs.
We have been seen by a feeding specialist who suggests more spoon feedings, a neurologist who said he is totally normal, but could use a g tube, a ped who says no tube, and my son is totally normal, a ped gi who has given the meds, but pushes and endoscopy without other help, another ped who suggested milk allergies, and we are just so tired and lost! We need some help and I am scared as he has gained weight so slowly since birth, that he will never be 'normal'.
thank you
regina
Dear Regina,
I am glad you have found HealthCentral. There is much information and support here.
It sounds like you have many doctors working with you on the feeding and reflux issues.
Your son has a significant feeding aversion that may be from the reflux. It is important to figure out the severity of the reflux and adjust the medications until the acid has been reduced. Some children who do not respond to medications have reflux symptoms that are really food allergies (milk soy protein intolerance), celiac disease or eosinophilic esophagitis. Therefore, an upper endoscopy may be a good idea to rule out these conditions and see if the reflux is damaging the stomach or esophagus.
I am guessing you live in the UK, Canada or Australia since Losec and Propulsid are used in those countries. In the US, there are many feeding clinics and feeding therapy programs in hospitals and clinics. Most have a MD, speech therapist, behavioral therapist, occupational therapist and others to help a child learn to eat. Sometimes there is a physical reason why a child cannot eat such as a swallowing problem (dysphagia), sensory issue, etc. The feeding team will want to know the results of the GI testing because a case of severe reflux without any other problems is enough to cause a child to stop eating.
My daughter had to use a feeding tube due to reflux for several years. It is a huge decision to make. You will feel better about making a decision about a tube once you know the severity of the reflux, you have ruled out other medical conditions and you know a physical problem has been ruled out. The tube was very helpful to her treatment but it was not an easy decision.
Please keep in touch and let us know how you are doing. We can talk again via this page or you can email me privately on this site.
Let me know if you have other questions or concerns.
Best wishes,
Jan Gambino
The Reflux Mom
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