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.

Wow!!! I could have written this exact same post!!!

DS1 is 2.5 and the worst eater. Struggled terribly with milk as a baby. Slept absolutely terribly - had a sleep study done which showed oxygen saturation dips throughout the night indicating that he had enlarged tonsils/adenoids.

I have tried literally everything. Food just does not please him. The only thing that worked for a very short while was sandwich cutters to cut his food into different shapes. He merely says "yuck" when any food is presented to him.

My health visitor said that medically, they're only concerned if children his age are overweight. She's our third health visitor as the first two were utterly useless.. she's equally as bad clearly!

I don't have a solution to this but my jaw has dropped realising that we are not the only ones going through this!

I have the opposite problem right now. DS eats everything but while he’s growing taller he hasn’t gained any weight since since he was 1. Doctors aren’t taking us seriously because he’s maintained weight. If you manage to get a pediatrician to take it seriously please PM me the details.

Bottom line is if he isn’t underweight he must be getting calories from somewhere.

It isn’t possible to not eat at all and remain a healthy weight.

What comes out the other end? Does he poo regularly?

It sounds to me like he must be swallowing more than you think. Sometimes the only way I knew
Anything had gone in was because it kept coming out the other end.

I’d stop watering his milk down, that’s not going to help. And keep offering food.

Can I ask - to PP that mentioned pediasure, is there a dairy free option?

DD is 14 MO and is similar sounding though not as severe. She doesn't eat during the day - goes to nursery and will be lucky if she has toast and fruit. Will never eat what's on offer. At home she's a bit more flexible - if she's in the mood she will eat porridge/toast and will taste bits and pieces here and there. Sometimes she'll have a decent portion of dinner - has to be tomato based so like spag Bol or tomato pasta and that's about it. The dinner is just a recent development and I think it's only come about because she's starting to move around a lot more at nursery and as she doesn't eat there is literally starving.

The only positive is that she will eat things she WANTS so like yogurt, smoothies, fruits that are sweet but I know she is getting nowhere near the amount of nutrients needed from food alone.

She still BF before bedtime and during the night so hopefully is making up some of the calories.

With covid and everything she has only been weighed about 3 times in her life and I'm sure she's getting skinnier - though this is also likely due to more movement, crawling and starting to walk etc.

Have an apt with the dietician next month but I just feel awful that she refuses food. People keep saying that she will eat if she's hungry but it is very disheartening.

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 he had a sleep study done? Of abnormal, that can bring forward tonsil/adenoid surgery.

So does he want to eat? Ask for food etc? How is his speech? If he has a large tongue is that affected too? Would him having speech problems help to push for treatment?

But he is eating some little bits, so he can swallow? It sounds more like he's spitting it out because he doesn't want it, rather than that he can't swallow at all, or he wouldn't be able to physically swallow anything? As a pp suggested it does sound very much like sensory based issues. Absolutely don't water down his milk as he obviously needs the calories. I don't understand how he isn't underweight if he's eating absolutely zero and surviving on watered down milk, as pp suggested is he swallowing more than you think? Are there any other sensory issues? If he can drink milk, he could swallow purée, which you've tried to no avail, which all leads more to a sensory issue with texture rather than food.
I would be asking your GP for fortisip, or similar for children. They are milkshakes and basically a meal in a bottle, a very high calorie. That should at least get him some more vitamins and calories until you can figure out what's happening.

So sorry I haven’t got back to this thread but thank you SO much for all of your reassuring messages - it is so nice to know we’re not the only ones going through this.

I don’t think I explained myself well enough - so he’s never been able to swallow properly, from about 6m-1y he gagged and spluttered as would be expected with food during the weaning period, didn’t swallow anything and still drank lots and lots of milk so could sustain his weight then. This then continued well into around 16/18m. It was around this time we started watering down his milk because we thought maybe he really is sustaining himself on milk and not having a lot of room for other bits. He then started to eat crumbs (literally crumbs) of toast, and maybe the occasional grape and yoghurt but the skin would still be floating around his mouth hours later. Sometimes we would think he’d eat loads but he’d actually just be storing it in the roof of his mouth/in his cheeks etc and then it would be spat out later. Going to go out on a limb here and say it’s not sensory based. He used to put everything in his mouth, in fact up until recently he would try absolutely everything and seemed to love food! Just couldn’t ever swallow it no matter how hard he tried. He literally used to put bits of carpet in his mouth 😅

Anyway, so since we started watering milk down he’s started to lose weight quite obviously so we’ve kept a couple of bottles a day so at least he has something going in alongside his vitamins, we encourage him to eat smoothies/soft things/yoghurts which he can eat but any other puréed food (rightly so) comes straight back out but assuming this is due to flavour.

He coughs and splitters drinking juice/water from sports bottles which SALT said means he may have issues with it going down the wrong way or something blocking his air ways which would make sense,

Yes he had a sleep test, his oxygen levels dip very low in the night but this doesn’t seem to concern ENT who said the tests on under a certain age aren’t accurate (they go down to 80!)

He has a lot of regular chest infections too which SALT have seen as a red flag, his oxygen levels have gone scarily low during these and we have been admitted to hospital a lot. Still not taking us seriously.

Anyway; I am just thankful people can relate as it is so so upsetting. We are really trying hard with him as feel like we are on our own until our next appointments (which always seem to be cancelled or rescheduled and end up being WAY longer away than needed) so we are just ploughing through and hoping someone listens. I just feel so sorry for him, but we will get there.

Thanks again all xx

@trombolese sorry it’s taken so long to answer your questions

first regarding swallowing- it is actually more difficult to swallow liquid milk than it is to swallow a thin purée or thickened milk. A baby with an uncoordinated swallow will struggle with thinner liquids than they would with more viscous liquids.

So if he can swallow formula from a bottle but struggles with thin purée then it might not be his swallow - although it could be the way he is getting the food - bottle vs spoon feed place the food differently in the mouth. Please remember this was my experience years ago and I’m just a mum who went through this with one child but I am certain about the swallow of more viscous liquids being easier than say, plain water.

My son did have an uncoordinated swallow so from infancy had to have a long teat and thickened (only slightly) infant formula to aid the swallow. We were always advised by experts to give him any and all foods that he would eat - junk foods if he wanted them. He ate a LOT of ice cream and crisps but they kept his weight up calorie wise and he grew and remained 90th percentile. I was horrified at the foods I gave him - especially as I was told bite and dissolve foods are a good starting place because they don’t require a swallow, so baby learns that food isn’t difficult to manage here is a sheet from GOSH with those foods here he ate a lot of bloody quavers

My son also pocketed food, used to make me batty - even at 6 years old, I remember him eating something and seeing it in the roof of his mouth and cheek a few hours later. I was told it wasn’t unusual with kids with feeding problems.

As for him restricting his foods initially, yes, he did. Very much so. He first ate a shitty school burrito and then lived on white flour wraps with ketchup (along with infant formula) for a time. Then he would eat some other food at school and I would provide it at home and he would eventually eat it at home.

I was advised never to pressure him to eat and to not let him see my frustrations.

I didn’t let him go hungry because frankly he didn’t care if he was hungry, he would just rapidly drop weight if not given foods that he could and would eat.

Especially if he got sick, he would lose weight fast as he would quit the infant formula too and have to go into hospital on a Gastro-nasal tube just for a common cold due to dehydration.

He restricted fairly severely to about 30 foods (which must sound like an enormous amount but it really isn’t) until secondary and then made a big leap and broadened his diet dramatically and now is pickyish but will always try new foods and makes healthy choices, drinks water, makes his own food, and isn’t secretly drinking bottles of infant formula as I thought he would be at this age when I was a young mum! He’s just been out for a run, ate a healthy breakfast and had a vitamin infused smoothie.

I have only read your posts so sorry if I am repeating anything others have said.

Ds has a condition called ARFID - avoidant restrictive food intake disorder. It has a number of different causes and not a lot of known about it, we believe for ds it is because he associated eating with struggling to breath (lots of chest issues and full stomach didn’t help when little) I have heard of a few children who have had oral issues when younger who have developed it through the negative association which does make sense.

The fact he is drinking the milk is good, I would stop watering it down. Would he drink a peadiasure type milk which may help his weight?

I would also keep a record of his height and weight from your various appointments yourself so you can see if their is a pattern of weight loss/dropping centile or a mismatch growing between height and weight

Hi everyone, just wanted to update here to let you know what’s gone on since I posted as think it might be helpful for those in similar situations with similar aged children.

I realised in my original post I forgot to mention about DS’s severe obstructive sleep apnea (he stops breathing every night for about 25-30 seconds of every minute) and has done since he was about a year old…which is terrifying to say the least.

Anyway, a couple of weeks ago he acquired a nasty bought of tonsillitis which increased his not eating/not sleeping/OSA tenfold. He started going into respiratory distress while asleep (retracting, sucking in his ribs etc), which would stop as soon as he woke himself up. No positions would help this, and he was even obstructing when sat up which was just horrible. He had also lost around 9lbs (he is a big boy so not too concerning but also…concerning), was grey, gaunt and energyless.

We contacted our ENT consultant who totally dismissed my videos and said he was fine and nothing was wrong and he’d be happy to see him at his usual scheduled 6 monthly appointment despite listing all of the above and then some. I was so upset and quite frankly furious at how could he see this little man in such distress and just not even be bothered. I don’t even think he read my email.

Anyway, we sought a 2nd opinion, luckily off of someone in the NHS who asked us to bring him in ASAP. Immediately he said that he needs his tonsils and adenoids out urgently as his obstructing was severe and life ruining (in the sense that his quality of life was 0). I could have actually cried in his office (and did when I got back to the car). His sleep study has since come back severe and he is booked in to have an adenotonsillectomy next week. His tonsils were actually covering the entire back of his mouth but even when they’re not enlarged they are still obstructive.

I am praying that this will be a miracle cure for our little man and he can get back to doing everything a toddler should be. I’m extremely anxious about having the surgery done while he is so little (he’s 2y4m) but the consultant was adamant that it’s a matter of urgency.

Once again thank you for all making me feel less alone and being so incredibly helpful with your tips. If anyone is in a similar position then PLEASE speak to a 2nd/3rd/4th doctor if you feel it’s necessary. I always knew in the back of my head we were being fobbed off by someone who didn’t really want to know/deal with a smaller child but wasn’t aware of quite how bad the situation was.

Thanks all again xxx

Thank goodness someone took you seriously at last. I hope the operation helps and he will start eating soon.

Oh wish you'd mentioned in your OP - my DS had exactly the same. Can't tell you what a difference removal made to his appetite!

So pleased you've pushed hard enough that you've got to the solution, but what a route.. shouldn't have been that hard for you or your child.

Hope the op goes well...my DS's surgeon said it's one of his faves to do, as it makes such a collosal difference to weight, height, sleep, general quality of life 🙂

Thank you! Can I just ask, when did your DS have his removed? I’m so worried as his OSA is very severe and so he’s high risk already on top of being only just 2. There’s been lots of talk today about specialists/him having it done in a specialist hospital and now I’m completely panicked.

The treatment planned might do the trick but if there are swallowing problems as you describe with coughing and spluttering on liquids and regular chest infections, you need to request a videofluoroscopy (I'm surprised the SLT didn't given what you've said here)

@trombolese so sorry, only just seen your post. My DS had it done when he was 6, which is five years ago. We actually chose to go private after an overnight hospital sleep test confirmed the sleep apnoea, as the wait on the NHS was going to be so long, and it was already having such an impact. However, the surgeon and anaesthetist were v senior and specialist in NHS, and the private hospital was right next to our v.good.NHS teaching hospital, so I was reassured on that side of things.

I think it's known as a relatively straightforward procedure, but they do need to be careful with kids with apnoea. Specialist as poss care will be a really good thing for him to have, I promise!

My other child had her first general aged 1.5, so I really feel your pain contemplating it all with such a little one. But it's good to get the chance to sort it out as early as possible for him...it had a huge impact on my son's development leaving it so long, I think...

Please do PM me if I can give any more experience or reassurance on the general or recovery after the op x