8 month old can’t digest food - please help!!

[AmberM2022]

So my little one has been weaned since about 20 weeks (as guidance from peads and docs) due to severe reflux. This never helped. And now we are at a point of all food even a teaspoon of purée is being forcefully projectile vomited across the room and all milk feeds coming up! I really am at my wits end, we have been given all sorts of medication for reflux, he’s on Neocate milk as they said he’s CMPA. I do have pyloric stenosis that runs in my family but keep getting fobbed off it isn’t that. In the last few days it seems to be 10x worse than ever before, he opens his mouth for food and get excited when he see’s it but as soon as it goes in and down his throat he starts to choke, you can see the panic in his eyes and on more than one occasion he’s turned blue choking then the sick absolutely flys out.
I am starting to think i should just take him to A&E and demand someone takes me seriously and does a scan or something because i’m convinced there is something wrong in his food pipe or something!!
Has anyone had or heard of anything similar?

Oh bless you. No real experience of this particular issue but film it, they can't ignore it if you show them. I'm not entirely sure who you need to see medically but I would recommend getting a private feeding assessment. Can highly recommend Stacey Zimmels/ Feed Eat Speak. You can get a feeding consultation where they assess swallowing, gagging, chocking and then develop a plan for you or can refer on if needed. Even a letter from a specialist like her to your gp might be useful. www.feedeatspeak.co.uk/does-your-child-need-help/feeding

My brother had pyloric stenosis as a baby and this was my first thought before I even read that it rubs in your family. Take him to A&E.

Runs, not rubs!

Also, record what's happening. The doctors only get a glimpse and not the full picture. Video evidence is always crucial.

Thanks everyone for your comments, we took him to A&E yesterday morning he had a glass blood test and they said it came back okay so doesn’t have pyloric stenosis (they said this is how they disagnose) So after a good few hours got sent home with a letter to our pead that he needed booking in for a bevariun swallow? (may have spelt that wrong) But could be a good few weeks.
We have just been woken up to LO choking on his cot got him out and he was blue choking on his own sick AGAIN got him out and it’s absolutely everywhere. I’m just in tears now because i have no idea how we can leave him like this but A&E said they couldn’t do anything for him. Would i be silly to take him back? I find it crazy i just have to sit at home and watch him like this, he takes an ounce of milk and absolutely chokes to death! I try video it but it’s so horrific obviously our first thought is him and not the camera but i do know we need to get it on video!

Barium meals/swallows are horrible! I had a few as a kid and one of them was a thick cement like drink you had to drink in a certain amount of time before lying down under a machine that watches the bolus form and it’s path down to the stomach and if it takes any detours, gets blocked and even times transit times. The second one I had was some radioactive liquid put into scrambled eggs and then the same deal.. lay under a machine but this time it was for a few hrs (they put on a few movies for me to watch while it scanned the path). That one was so much better even though it was a lot longer because the radioactive stuff was thin, loose and tasteless.. sounds like your little one would unfortunately need to have the one I had first since he is chocking on almost everything but I do question how he will manage a drink so thick and a tube won’t be feasible as they need to see the path from the mouth to the stomach and sometimes further down.

For me, it showed that I had Gastroparesis which was severe however I didn’t have issues like your son but at the same time I also wasn’t as young as your little one which is a time swallowing issues are common.

I’m not sure where exactly you are located but if you don’t feel like your getting anywhere I would recommend taking him to a children’s hospital where they can put him inpatient and actually witness for themselves what your experiencing with him. It’s really strange the test will take so long as I had mine when I was inpatient and just before I was to be discharged I needed the test before I went home.. was arranged in a couple of days!

check around for your best local children’s hospital and take him there and possibly try again or even go private if you have the ability to do so as it will fast track things and give you a better chance at getting answers.

good luck and I hope you get answers soon.

Maybe try videoing it? It’s so frustrating when medics dismiss women as new mothers. I know in the moment you might not want to, but it will help medics understand what you’re describing is not normal spit up

There is no way he is going to be able to swallow the barium meal. It's going to come straight back up.

You need to bring him back to A&E before he becomes severely dehydrated and ill. If almost everything he swallow is coming up again he's at risk.

Most things of relevance not mentioned 🤨.

you don’t mention age, but obviously above 20 weeks. Are they now able to sit upright or not?

this would not be new as if they are not keeping down milk it would have occurred from birth, or has it started only at a particular point?

as your baby is >20 weeks they have obviously been keeping something down as you don’t get to that point not being able to keep anything down.
what percentile are they currently?

when they went to A&E, as you were sent home with instruction for referral, I would think there was no dehydration or that would have been addressed on the spot in A&E, and condition was such that inpatient treatment was not immediately necessary?

with filming, there are two adults presumably, it would help if one filmed and one assisted the baby if necessary rather than no filming and two parents assisting baby.

understandably, this is distressing as parents, but if current condition allows (presumably if sent from A&E), your main aim should be getting into the paed asap to start hall rolling on tests required in a systematic manner.

The age is in big bold letters in the title…

@HoppingPavlova the way you spoke then, not to mention your lack of comprehension skills, didn't come out across well at all.

@HoppingPavlova strange as i put the age in the title? He’s 8m so yes fully able to sit up and stand just can not crawl yet.

No he apparently was not dehydrated despite not having a wet nappy for 10 hours which i don’t class as normal and he’s done the same again in the night.

He has always been sick from birth we were always told it was reflux - but absolutely never this amount since last week it’s uncontrollable and this is when the choking has started which he never did before.

Thanks everyone i did actually manage to record him this morning it was horrible to video but yes my partner was there so he assisted while i took the video and we are now sat back in A&E because i don’t feel comfortable waiting weeks for tests when he is consistently choking on milk, food and even fresh air!!

Okay, apologies I didn’t read the title correctly.

So, he hasn’t dramatically decreased in centiles but this level of reflux is relatively new despite a lower grade being present since birth and he is now fully upright for most of his waking time, which also makes a big difference.

He obviously needs assistance but it’s the pathway that’s questionable. If not dehydrated or under immediate threat you will be hard pressed for A&E to do anything other than on refer to paed service, which is where you need to concentrate pushing your efforts as opposed to A&E. Often getting A&E to do anything if not in imminent threat is like pushing shit uphill and rightly so (I have intimate knowledge of this area). A sudden large drop in centile can fast track you with referral though, which should have occurred in the situation as you describe. If he is dehydrated that’s actually a lot better as it gets immediate action and investigation.