2 year old doesn’t and has never eaten

[trombolese]

Writing here because I’m at the end of my tether.

My now 2yo has never, ever eaten well, if at all. He’s struggled with milk since birth (severe silent reflux that went on until he was about 16m), then around weaning age he didn’t get on with food - he would “chew” or suck then spit it out after giving it a go. He then was happy to try all foods until around 18m but spit them out every. single. time. and has now entered the fussy toddler stage where they don’t really want to eat anything at all.

We have sought advice from paediatrician/ear nose and throat consultant and now SALT. Both pead and ENT think he has enlarged tongue which is incredibly rare with no other abnormalities. He also has slightly enlarged tonsils and adenoids but nothing really to write home about. We saw SALT yesterday and she kind of said “well he chews fine and drinks milk fine so there must be no problem” all while having remnants of grape and sandwich in his mouth where he can’t swallow it. I mean ?!

ENT have also said they will not operate until he is over 3.

So what now? I feel like I have spoken to everyone (bar a dietician, whom we are currently being referred to) but I feel like I cannot let him go until 3 years old and possibly longer with these issues?!

I feel like COVID and not being able to access people when you need them has been our enemy here but it breaks my heart that because of this he is going to suffer physically and behaviourally.

I know it is something to do with his throat as he snores like a dog and wakes himself up when he can’t breathe.

Has anyone else’s LO’s had any of these problems? I really just want to cry!

Just for reference: since 1y11m he will now eat a quarter bit of toast, a quarter of a sandwich (usually just a couple of bites), sometimes oranges but will spit the pith out and sometimes smoothies. We have tried pureeing his food etc etc anything you can think of but to no avail.

Tia.

Bumping for you , I can't believe nobody is taking this more seriously, professionally I mean. How is his weight?

Are you able to go private? I would definitely try going down that route if it's possible for you. They'd take it so much more seriously.

How is he doing growth wise? Are you supplementing with vitamins?

Have you looked into possible sensory feeding issues? Maybe around food textures or the sensation of swallowing or chewing certain foods? Tricky to do though as it’s not a commissioned service in most counties. Salt can say if it’s a physician issue but not if it’s a sensory one usually.

See this is the thing, ENT aren’t taking him seriously because he is a solid weight and is very tall for his age and this apparently “can’t possibly be sustained by milk” but it really, really is because he literally eats nothing. Like, I wish I was exaggerating. I get kind of frustrated with comments like this from professionals because WHY would I want to be putting him through all of these tests if he was eating well and thriving?!?!

He now only has watered down milk in the day and a cup of full milk before bed and has done for about 5 months now, it has made no difference aside from the eating that one bit of toast but even this isn’t regular. He wasn’t even having that much milk to make up for the food in the first place, literally maybe 1 or 2 cups more.

He does have vitamins yes, but how much does this really do ☹️

My lovely parents have said they will pay for him to go private but only if he needs any operations etc. I’m starting to think this may be the only way forward for us.

Well surely he’s underweight?? What does the Pead want to do about that? Aren’t they concerned?

Aaah cross posted. You say his weight and height are good.
I would pay privately to see a paediatric dietitian. I know you’ve been referred but that could take a long time on the NHS.

How is he thriving on such low calories? What surgery has been discussed with the ENT?

If he is thriving, often surgery is riskier than a wait and see approach.

DD has eating issues, though not the same as your DS.

What helped me was separating 'is she getting enough food?' from 'is she eating normally?'. The answer to the first was evidently yes (and it looks like the same for your DS) - DD was overweight at 3. She drank a lot of milk; the majority of her calories came from it until she was 3.5 (so your DS can definitely be getting enough calories from milk; if he's getting vitamins, specifically iron, as well, then nutritionally he's probably OK).

I don't have any answers to the food side I'm afraid - DD remains incredibly fussy, though eats an approximately balanced diet. It does affect all of us at some level (eating where others provide the food is always a challenge), but it doesn't dominate our lives if that makes sense?

As an SLT my first thought was issues around oral feeds because of a negative association with pain from reflux early on. If you were phoning our helpline my first thought would be a dietitian. Some things that sprung to mind would be to try lots of sensory play with food, away from the normal "eating" situation e.g. stacking pieces of toast and knocking over, squashing cold boiled spaghetti, shovelling beans in a cup etc to take the pressure element away. Another thing might be to offer the safe foods (milk from the look of it!) in different ways - on a spoon, feeding like soup, in a cup, in a bottle, through a straw etc to try different feeding methods with a "safe" taste and texture. Hope you get some help from a dietitian - don't lose hope if it's not quick, think where you would like to be in a year's time rather than hoping tomorrow will be the day he starts eating "everything". Vitamins will be helpful so keep going with that!

DD is 2.5 and on the waiting list for tonsils to be removed and grommets put in. She has severe reflux and CMPA. So tonsils can be removed before 3, her tonsils are the biggest the ENT consultant and Paediatrician have ever seen, she only has a space smaller than a 5p to actually swallow food so she can be quite picky with what she eats. She won't eat fruit if its not pureed.

OP, I've private messaged you with a recommendation for a really good dietician. I'm so sorry, I think I've accidentally spammed you as I thought the message hadn't gone through, but anyway, hope she may be of help!

I also forgot to add, you can follow rockabyereflux on Instagram but she is a professional who has wrote a book and who you can pay to have a consultation over zoom about anything and everything relating to reflux and she directs you where to get help

He isn’t underweight but I have NO idea how and I think this is our issue and why we are having to fight our side so much. He did have a lot of milk in his earlier months (probably up to around 16m or so) due to his reflux so was extremely chunky as a small baby (like 35lbs at 1!) but now he survives on nothing. He literally survives on a crumb and milky water most days, and this isn’t even exaggerating. He is definitely getting much skinnier than he was but he is very tall so I think I would expect this (his brother is tall and skinny). I so wish I was exaggerating the food situation. He chews fine, he just spits the food out. And now he won’t even put the food in his mouth ☹️ His tonsils are large but not crazy so, it is is his tongue and adenoids that are the problem. Is it normal procedure for them to leave it until 3+? Even if he struggles so much with food? He is so so pale and basically eternally miserable because he doesn’t eat. It’s so hard!

I think a lot of it definitely was scared of eating due to reflux and now it’s been exaggerated into toddlerhood especially with the tongue situation etc. I think there is an obstruction due to how hideously he sleeps/wakes up/cries/resettles etc.

ENT haven’t discussed a specific surgery with us as I understand that the tongue situation could be quite complicated - he just kept saying I won’t operate until he is 3. He needs to have some invasive testing done first but again; he is waiting until the end of this year for this.

Agh, so thankful for all of your responses even if this is just a soundboard and to know I’m not alone. Its looking like a private dietician may be our best starting point.

Just wanted to add, other than the obvious I’m really worried about how this is going to affect his nursery and school life. He is such a good boy but I can see it affecting his behaviour a lot already and I know this will only get worse alongside the terrible sleeping. The whole thing is so worrying!

Also also he has been referred up to GOSh for his breathing so I’m hoping this will be a good ball rolling to get in and speak to other professionals from different hospitals about it all.

If he is just beginning to lose weight or his growth begins to slow then they might take more notice. I know it is so very stressful when your child won’t or can’t eat - mine was worse and I had no help because he continued to thrive.

However, I gave him formula in a bottle because I refused to allow him to stop growing or starve.

So he drank formula from a bottle until he went into Reception - we had private medical support but the infant reflux had caused him problems and he just wouldn’t eat solids. I think he was having 8 to 10 bottles when he was 4 years of age. In spite of a virtual army of experts and all the advice and screening possible, he would not eat.

I thought I was going to raise a grown up man drinking infant formula.

He’s now an adult and tall and muscular and eats a huge variety of food. His teeth weren’t affected by so much bottle drinking either - something I was worried about.

I don’t know if that is reassuring at all or makes things worse considering it took my son until mid way through Reception to want to eat solid foods. I think it was peer pressure- he wanted to eat at lunch time.

Anyway, hopefully you will find help at GOSH.

If I were you I’d give him formula if he will drink it. Has anyone suggested that as he grows his tonsils and tongue might not be so problematic?

@JTK392 can I ask, when your son started eating 'normal' food, did he eat a good variety or was his diet fairly restricted to start with? DD really didn't want to wean; she was also drinking formula while in reception (though as part of a mixed diet by then). Her diet is still very restricted; I live in hope that one day she'll eat more normally.... She's currently 9

Stop watering down the milk. He clearly needs as much nutrients from sources he will take. He can live mostly off milk and vitamins. Demonstrated by his strong growth. That's all you can do while you wait. He may grow into his tongue, so the bugger he gets the easier life will be. This would be preferable to a complicated surgery. Also adenoids can grow back but starts shrinking at 5 I think they said to me. We are waiting as well...mine doesn't eat but also doesn't grow which is way more worrying as actually isn't getting the calories. If he is thriving he is getting what he needs so try to not stress about that and keep going. Good luck

@trombolese

He isn’t underweight but I have NO idea how and I think this is our issue and why we are having to fight our side so much. He did have a lot of milk in his earlier months (probably up to around 16m or so) due to his reflux so was extremely chunky as a small baby (like 35lbs at 1!) but now he survives on nothing. He literally survives on a crumb and milky water most days, and this isn’t even exaggerating. He is definitely getting much skinnier than he was but he is very tall so I think I would expect this (his brother is tall and skinny). I so wish I was exaggerating the food situation. He chews fine, he just spits the food out. And now he won’t even put the food in his mouth ☹️ His tonsils are large but not crazy so, it is is his tongue and adenoids that are the problem. Is it normal procedure for them to leave it until 3+? Even if he struggles so much with food? He is so so pale and basically eternally miserable because he doesn’t eat. It’s so hard!

I think a lot of it definitely was scared of eating due to reflux and now it’s been exaggerated into toddlerhood especially with the tongue situation etc. I think there is an obstruction due to how hideously he sleeps/wakes up/cries/resettles etc.

ENT haven’t discussed a specific surgery with us as I understand that the tongue situation could be quite complicated - he just kept saying I won’t operate until he is 3. He needs to have some invasive testing done first but again; he is waiting until the end of this year for this.

Agh, so thankful for all of your responses even if this is just a soundboard and to know I’m not alone. Its looking like a private dietician may be our best starting point.

The ENT didn't say they wouldn't do it before 3 to me. The paediatrician said they might make us wait, but her reflux is awful, and a barium swallow confirmed it within seconds how bad her reflux is. She can't hear properly because her ears are full of fluid behind the drum, and her tonsils are actually bigger than mine. I expected to have to really fight with ENT, but mine literally looked in her mouth and said yup, they need to come out. It sounds like your son has got a food aversion because of his reflux, rockabye reflux is a amazing professional that can point you where to go from here. It was too late for us because I'd already managed to push a lot of Doctors for extra testing and things to get results but I've heard some great stories about her. For me DD is on a low priority waiting list for her tonsils removal but I was told to call my GP to get a supporting letter to help her bump up the list ( she'd had 3 infections already this year every time needing antibiotics so they agreed). I wish you all the luck in the world, its hard when they are ill watching them struggle with reflux and then for my DD she struggled to breath when asleep

I echo what pp have said and like @EchidnaKidney thought there might be some sensory aversion going on due to his reflux before.

Re doctors: do you keep a food diary? If not then religiously record everything he consumes (measured/weighed) and I would also video him attempting those solids he tries a few times so they can see you're not exaggerating when you say how little it is.

Good luck op

My 8 year-old had very similar issues when he was little although they have improved a lot as he has got bigger. He was born with a severe cleft palate so the muscles in his mouth and throat don't work properly. I would imagine it your son has a large tongue and adenoids he will struggle to get the food to stay in his mouth. I found anything liquid made it worse and he still struggles with soup etc. I would try and do lots of messy play with food.

Have you looked at a drink like www.pediasure.abbott/uk/ It might give you reassurance that he is getting the nutrients and then do the messy play / cooking activities / growing and picking food etc

It must be so frustrating to not be listened to. Keep pushing.

Have you heard of ARFID? My DS is 6 now and eats very little but still on the 97th centile. I don’t understand how he can be but the dietitian thinks he’s getting all his nutrients aside from iron and vitamin D so he takes a supplement now. I really hope you find the help you need.