5 month old, food aversion due to reflux!

[finleysmummyx]

So my 5 month old lb has had reflux bad since birth but never got the right medication from doctors and it got to a point where he just stopped taking bottles he also has cmpa.
From 12w to 20w old we were at a&e at least twice a week getting sent home every time after being told to persevere things will get better. He started on gaviscon which done nothing but constipate him so bad he would bleed! Then he was on ranitidine which also did nothing. Then he was given domperidone aswell as ranitidine... Still nothing!
20w old we were at hospital after being referred there for his bronchitis where they realised that he actually wasn't taking any bottles at all!
He was started on 20mg omeprazole as well as domperidone which completely soothed the reflux but he still wont eat!
He's been sent home after 2 weeks with an NG tube and we have to wean him after advice from his consultant and dietician due to a 'severe reflux and feeding aversion' But he doesn't like anything near his mouth! Every last drop of milk goes down the tube and if nothing improves it is going to result in a gastrostomy which i really want to avoid!
Anybody got any tips or advice to help?
He's not fed properly for at least 3 months now i just want things to improve or maybe hear from someone who has been through similar situation.

I'm sorry you're having such a worrying time.

My DS had severe reflux & we continually struggled with food, for many years. It was only at age 4 he started eating properly, it has been a constant battle with food. He was also on Omeprazole (adult dose) & Domperidone (not convinced it made any difference). It was an awful time.

It sounds like your DS's food aversion/reflux are at the more severe end of the scale. Certainly beyond my experience.

I'm not sure what to advise; a gastrostomy could take the pressure off you & him - it can also be removed easily when no longer required. But I can understand your reluctance too. However there are risks with NG feeding at home & I can see why the professionals are concerned about that.

Could you ask for a timescale from your consultant eg 2-4 weeks? That would give the Omeprazole time to work.

Hes been on omeprazole and domperidone for 7 weeks now which has calmed the reflux but hes still very reluctant to take a bottle or even solids!

His consultant and feeding specialist who we see every week has asked me to write down everything hes taking so she can see and the most hes taken orally in the last 7 weeks is 6oz in a whole day everything else is down the tube.
It is hard as ive never spoken to anybody else who has been in this situation so feels like im just helpless.
Did your DS have NG tubes or anything like this?
Thanks for replying

DS never needed NG feeding, he was a very poor feeder orally & I always struggled to get his daily volumes in. But we managed to avoid tube feeding (apart from in NICU).

Assuming you're going to a large teaching hospital/regional centre & seeing a specialist Paediatric Gastroenterologist? (as opposed to a general paediatrician in local/district general hospital).

Also, is your DS on a high calorie or hypo-allergenic feed? My DS was on Infatrini, so I "only" had to get 400mls a day into him (which was still pretty difficult).

Hes under a feeding specialist who comes to our house regularly, a dietician, a consultant and soon he'l be seeing a speech and language therapist.
My DS was on neocate for 7 weeks which he refused and screamed every feed which i think and many of the nurses think was half of the problem as it is so disgusting. Then in hospital they tried nutramigen which he didnt take so he is now on aptamil pepti 1.
Its hard to get anything down but he seems to be taking solids much better the past couple of days after a month of not being very interested.

Hi finleysmummyx,

my DS has severe reflux and food aversion as part of a wider condition. He was ng tube fed from 7 months and had a gastrostomy placed at 16 months. He was almost entirely tube-fed for 4 years, and since the age of four, he has been 'learning to eat'. Now aged 6, he has done brilliantly, and eats a respectable range of food (as long as it isn't touching, certain textures, etc!).

He is still on Omeprazole, but we've got him down to 10mg per day. The tube-feeding was hard work and I did wonder if we were doing the right thing at the time but I am sure now that he would not be as strong and fit as he is, if he'd been left to struggle with oral intake.

I've namechanged for this post as his condition is rare and I'm worried it makes me very identifiable, but please do ask any questions you want.