My daughter refuses to eat. She was hospitalized for a week for dehydration and came home with an NJ tube. She has really bad reflux but her endoscopy showed no ulcers or lesions. The doc says she has non-acid reflux. We spoke to several OT's there and they said she had nothing wrong with her suck reflex or abnormalities. Now the dr says before we do anything else, because the NJ tube is not helping her eat by mouth, he wants us to see another OT for tips and tricks. They have given us some and they don't work. Do you think seeing another one will be beneficial or necessary?

Hi Melony:

It looks like Kyleigh has a nasogastric tube and I noticed under her picture that she didn't start spitting up until she got it. I'm going to get on my soap box now. Your beautiful baby Kyleigh has a garden hose up her nose and down her throat. Have you ever tried swallowing with something up your nose and down your throat? WHen I perform modified barium swallow studies, those awful tubes incoordinate the swallow so bad that they make babies aspirate and have breast milk or formula going up into their nasal sinuses. I will often take them out and compare and contrast (with and without the tube) the swallow function. It is amzing how much better the babies can coordinate their swallows without those tubes.

Yes, for many the NG tubes are a medical necessity. However, in feeding therapy, I get much further if I swaddle my babies tightly, distract them with Baby Beethoven or Mozart, and thicken the feeding. Kyleigh may have nothing wrong with her suck, but she she now has a nipple aversion most likely because of the reflux and NG tube. My advice would be to call your pediatric GI and get a recommendation of a good feeding therapist (OT or speech therapist) who has experience with NICU babies. Please write back with questions. Your goal should be to get that tube out ASAP. Many babies who have NG tubes after 6 months of age will end up with a g-tube in the stomach, and that should not be your preference. In addition, there is a higher risk of infection while Kyleigh has that tube in her nose/throat. The tubing is dilating her upper and lower esophageal sphinchters (leaving them open) which is allowing her stomach contents to come back up more readily.

Robynne

We spoke to occupational therapy before they put the tube in and then afterwards. It was the same response both times. I don't think she has any defective problems causing her not to eat, she is in pain somewhere. Or she thinks she is in pain. Thank you for your help, though. I do think her throwing up is due to the tube.

oops sorry I posted that last comment on the wrong profile, I am at meagan's house. But I am Melony. lol

Melony:

I certainly did not mean to imply Kyleigh had any kind of defect. I was speaking about NG tubes in general. MBS studies typical view the very beginning of a feeding when most babies are more coordinated. I work with a fabulous radiology team. They allow me to watch infants at the beginning of a feed (with and without a tube) on fluoro (x-ray) and then we let the babies fatigue and drink 2-3 more oz. off of fluoro. The end of the feeding is where we usually see trouble occur. We try to fluoro the last 1-2 oz. Incoordination or aspiration is called dysphagia, and it means weakness of the swallow. Dysphagia often, but not always, goes hand in hand with reflux. Defects are abnormalities seen with the anatomy, and are not very common.

I do not doubt Kyleigh is in pain. Reflux will do a number on infants and cause them to shut down during feedings. Babies are smart....they associate pain with the bottle or breast. The NG tube is not helping her feeding aversion and only makes the reflux worse because it dilates the lower and upper esophageal sphincters (keeps them open when they typically close after food moves through), allowing stomach contents to come back up. I responded to your comment about the tube under your picture. I do see many babies like Kyleigh in my practice and I hope you can find a good therapist who can help you get her back to oral feeds quickly. Good luck.

Robynne

Thank you so much. I didn't even think about infections or anything like that. We are certainly trying to get this tube out. We are up to about 2 oz the 8 hrs her feed is not going. So we will see. She actually had the modified barium that you referred to., because with her first upper GI she aspirated on the first suck. But the modified she didn't do it. Maybe we need to do another just in case. Can you sometimes do a study that comes back normal when something is actually going on? Maybe a fluke happened the first time? Sorry to keep asking you questions, but I don't get a whole lot from her doctors.

Hi Melony:

Sorry I am so late responding to your question. You mentioned Kyleigh aspirated on the first suck of the UGI. This does occasionally happen when a baby is drinking while lying down, however, the barium is quite thick. It is much thicker than formula or breast milk and a baby typically will protect their airway. To answer your question, yes, a study absolutely can come back "normal" when something is going on. We often don't catch reflux on UGI's because the radiologists only watch for a short duration and the infants drink very heavy (and not a lot of) barium. MBS studies usually watch the very beginning of the feeding, not the end of the feeding when a baby is tired and poor endurance and incoordination are more apt to make them aspirate. Hope that helps :-)

Robynne