Question: I’m seeking help for our son. The short story is that my son was born at 25 weeks and was in the nicu for 3.5 months and has overcome many things. When he left the nicu he was always a tough feeder (fussy) but always ate plenty by bottle. Then during a re admission, his feeding slowly declined and after a few weeks he was no longer willing to try anything. The nurses were fairly forceful in their efforts in my opinion. He has now been ng tube fed for 4 months. He is 9 months, 6 adjusted. He is going to go again to see a feeding specialist and back to GI but I'm looking for any possible help. I should also mention that he has severe reflux and it really bothers him. He vomits violently 2 or 3 times every day. Please, any tips. We currently offer him tastes of purees but he does not want to swallow the food I think because he is afraid of choking. Thank you for any help you can provide.
All medical issues that affect feeding must be managed first. He's not going to eat unless he feels well, and can’t be expected to before then. So definitely no forcing - that will be your number one "feeding therapy commandment" so to speak. I can understand why some parents / caregivers do this - they are hoping to prevent the child from having to be tube-fed. But forcing can end up causing more damage than good. Everything must be child-led.
Reflux and GI issues in particular can be very uncomfortable and painful, so it’s only natural that he doesn’t want to eat, and very good that he’s going to a gastroenterologist. In my experience they usually have a take-home sheet on reflux tips, so be sure to ask for that (tips like avoiding acidic foods, remaining upright for 30 minutes after eating, etc.). You may also want to have him checked for allergies to make sure there aren't any problems there. Once the reflux and any other GI or medical issues affecting feeding are managed, then (and only then) you can try some of the tips below:
When feeding him, either orally or with the ng tube, try to create a calming environment. Dim the lights, play soft music (just the gentle, la-la-la kind without words), tv turned off, etc.
You can try doing gum massage during his tube feedings, and/or have him bite/chew/mouth a Baby Grabber. If you have a Z-Vibe or proMini, you can also stroke the sides of the tongue, stimulate the inside of the cheeks, and brush or tap the tongue (with or without vibration with the Z-Vibe). The goal is to provide stimulation to the tongue, lips, cheeks, and gums - as if he were actually eating while being fed via tube. This is to help him understand the connection between his mouth working in order to make his tummy full.
You can also try dipping the Baby Grabber, Z-Vibe, or proMini in a tiny bit of food and present it to him. Or put a tiny bit on your finger for him, or on his hand/knuckle.
Although I can’t know exactly what’s going on without evaluating him in person, it sounds like reflux is the primary issue making him not want to eat or swallow. However, once the reflux is managed, you may find that he has developed some aversions / anxiety over food, as he may still associate it with pain and discomfort. If that’s the case, you may need to help make him comfortable with food again. To begin with, he doesn't have to actually eat food - that will come later. No forcing, just play play play with foods. Make pictures out of food, squish it, smash it, etc. Clean up later :). Make sure you use foods with varying textures and consistencies. For more background on why food play is beneficial, click here. You might also need to work on decreasing oral defensiveness, and may find this article on food refusal helpful, too.
Also, an important note on reflux – I have known parents to take their children off reflux medication without consulting with doctors. They usually do this between the age of two and three because their child appears to be symptom free. But then feeding issues begin again. So, be sure to consult with his doctors first before doing so.
It will also be very important NOT to try anything orally until his GI issues are managed - you don’t want him to equate the symptoms of reflux with anything oral, as this may cause more aversions.
Last but not least, please note that the above are only my best guesses without seeing your son in person. There is no substitute for an in-person evaluation with a feeding therapist plus other professionals as needed, so the feeding specialist you mentioned will be your best resource, and be sure to follow through with any home practice/advice he/she gives you for the best results.
I hope some of this helps! Please keep me posted on his progress.
Debra C. Lowsky, MS, CCC-SLP