Big issues with 7 month old feeding

[AnxiousAuntie89]

I'm extremely worried about my tiny nephew, and feel like I'm banging my head against a brick wall with his parents. I suppose I want some reassurance I'm not wrong to be so concerned, and advice as to how I should approach things.

Little one was born in early April weighing 6.8lbs, via C-section after a failed forceps attempt. He had trouble nursing right away. His mum tried to establish breastfeeding but it was hard and after weeks of expressing and then topping up she transitioned fully to Cow and Gate formula. Baby was found to have a tongue tie which was snipped at a couple of months. Apparently there is still some degree of tongue tie but none of the health professionals think it's affecting him and are leaving it.

He has been struggling with constipation and gassiness since the start. His farts are stinkier than I'd have expected and he can go a few days between poos. His parents have been told to use movi-something when they think it's really necessary. He was pretty sicky' for the first few months. His parents tell me he's better now but when I visited the other day (only for the second time, they live very far away) his hair smelt of sick when he woke up from his nap, so he must have been rolling in it. He's also the dribbliest baby I've ever known and has been from the off.

He really isn't gaining weight as he should! Apparently he's in the 0.2 percentile. They're happy as he's gaining weight but he's following the same trajectory and to me that is startlingly low. He's actually been on Similac high-calorie formula since August (2 of his feeds, the others still Cow and Gate) and is fed at 3 hourly intervals during the day (he sleeps through at night).

Now this is what worries me, he has very little interest in feeding, to the point where his parents are forcing him. Apparently he'll start off eagerly but after 30mls or so he'll lose interest and from there on it's a battle. He's happy to sit or lie there playing with the bottle teat or biting on it, but he won't latch properly without major distraction. They sing to him, dance in front of him, play him videos, sternly tell him off, and just desperately try and persuade him to take more. They end up pinning his arms down and just forcing him, to which he sometimes seems to capitulate and start suckling, sometimes just fights and screams. Feeds can take an hour or more with him hysterical when being forced but very quickly becoming calm again when the pressure is off. For me this is going against everything I've learned about infant feeding (I'm a nanny) but its on the advice of a child nutritionist! From what I gather she isn't concerned at all at this point. She says she'll refer him to a paediatrician when he's 9 months old if he won't accept solids either?!

Well they've been trying to wean him since 5.5 months, a mixture of finger foods and spoon feeding, and that's not working out so well either. At pushing 8 months he is refusing most things, gagging hard and making unhappy faces, and generally letting it all slide out of his mouth again. Unlike with the bottle his parents have a more relaxed approach (from what they tell me) with the solids and they're not trying to force him there. They've tried many things but the only things he's seeming to enjoy so far are melty sticks and mango puree.

I'm utterly perplexed by it. I've worked with quite a number of babies but they've fed well when not teething or being offered more than they need. They've been interested in food and have varied from naturally on the slimmer side to rolling in chub, but I've never met one so skinny as him. His mum is petite and so is her family, but my brother is over 6 foot and not slim. Baby is active (lots of leg kicking and apparently he's rolling now) although I would say he's a little behind the normal milestones as he's not sitting up unsupported, not rolling or wriggling anywhere with intention, and doesn't try and stand for more than a couple of seconds when he's being supported around the torso. He was very babbly last time I saw him in August but far less so this last time, and it's hard work to get a smile.

Anyway, I don't know what to do. I've suggested to his parents the possibility of silent reflux, that he could be intolerant to something in the formula and they could try alternatives to test the theory, that the residual tongue tie could be making latching uncomfortable, that the bottle brand teat shape or formula temp might not suit him and are worth experimenting with, or that they stretch out feeds to every 4 hours (better the bottle he's hungry for than the one he has forced on him which largely ends up in a muslin or his bib).

I haven't suggested that it could be he has sensory issues (I don't know anything about how babies with ASD cope with formula, but the way he's struggling with the weaning is ringing alarm bells there. I've also noticed him 'stimming' with a very repetitive and specific hand movement though that could just be me being paranoid.

I also haven't mentioned that some people who's little ones are delivered by forceps swear by Cranial osteopathy - partly because it's kind of 'woo' and alternative, partly because he wasn't actually delivered by forceps in the end, (although they tried he wasn't budging) and partly because I'd be so afraid of him being injured by the treatment.

I'm at a loss to know what else to do or say. I'm shocked the nutritionist could advocate the constant daily force feeding (I can see it setting him up with life-long aversions to food) and how she, the health visitor and GP can be so relaxed about how tiny he is ('He's going to be slim') and NOBODY is pushing for further investigations. His parents are labelling him as 'just lazy' and 'trying it on'. I feel on the brink of despair as there's only so much I can say without being that 'interfering inlaw' but I don't want to stand by and do nothing if there's any advice I can give 'as a nanny'.

Can anyone relate to any of this? Please tell me there was some magic solution for your little one, or at least, any tips for little things that helped, and what the root of the problem turned out to be. Did anyone have to routinely force-feed their infant but they had no longer-term problems with food?

If things are as bad as you’ve described than yes I would be very worried.
for a start he clearly has a bottle aversion. We were told you should NEVER try to get a baby to drink when they don’t want to. We came close with ours as he has a milk allergy, had reflux and in general milk-wise was a small and often baby but people made me feel he should be drinking larger amounts for his age and because of the allergy he lost a lot of weight in the beginning so I started offering the bottle constantly and he started to get stressed about it.
we were told to offer a feed, if he stops after only a little, you offer once more 5-10 minutes later and that is it until the next feed even if they only have a few sips. This takes the pressure off the baby to feed and also tell them if you don’t drink now you won’t get another drink until later and they catch on pretty quickly. If his parents are basically force feeding him that’s not going to end well.
If he gags a lot on food it does suggest some sort of sensory issue. Luckily we haven’t had issues with food (apart from allergies) but I have a friend who has a 10 month old that now has to see a specialist as her baby gags and vomits on anything that’s not a thin puree. It definitely seems to be the texture that bothers him and has a sensitive gag reflex. I’m not sure what the specialist recommends but I know he is starting to handle small lumps in food.
your nephew is still young so plenty of time to get support and help but certainly between now and one, is when it’s the best time to learn to chew and swallow without them developing food issues in future. You could try recommending solid starts. It’s an app that shows how to cut up food appropriately for a baby’s age and allows them to feed themselves and learn to chew. However if he gags a lot on solids (more than is developmentally normal) he should be seen by a professional.
I would seriously encourage them to push their GP for a referral to a proper Infant feeding team at a hospital.
It does sound like he’s a little behind in terms of motor skills but then some babies take their time and then suddenly out of nowhere do everything at once but combined with the feeding issues and ultimately like I said if it’s as bad as you describe I would think about speaking to someone yourself like social services. You won’t be well liked but your nephew’s health and wellbeing are more important.

Oh and lots of tummy discomfort, bad wind and constipation can definitely be signs of a milk allergy. GPs hate to diagnose it though as the prescription formula is expensive. Does he have dry skin, a rash that looks like acne or any other signs of CMPA?
Reflux is a sign of a milk allergy as it’s a way of the body rejecting the milk. Our baby was also incredibly difficult to burp, had mucus in his nappies.

I don’t have any advice but forcing feeds on a baby sounds heartbreaking. Have they asked for a second opinion?

Following the same curve even if 0.2 centile, isn’t always a bad thing. There will be babies that follow every centile.

@Pizzaandsushi Thank you so much for your long reply! I can't tell you how alone I feel with this so it's wonderful to feel heard.

Yes, I strongly suggested he could have a milk intolerance right from the start. His skin is fine though, which you wouldn't expect it be be! But my brother (his dad) had issues (not with eating exactly, but he was very miserable and unsettled for the first couple of years and very refluxy, even into toddlerhood) and my mum puts it down to a dairy intolerance with hindsight. My nephew is mixed-race too and I've read that milk allergies are more common in that case. It seems likely to me that that's a big part of the issue. I've raised this with them, repeatedly over my nephew's life and they aren't listening. This is the thing, I've advised and suggested and told them straight out it isn't normal and they need to push for more help, but I'm going round in circles. I think my brother just sees me as his annoying little sister and that the GP, health visitor and nutritionist are better qualified to judge.

With your little one, how old were they when you got a diagnosis? Was it all through the GP?

@tealandteal No, I think as first time parents they're just blindly following what they've been told which seems to be 'it's fine!' which is absolute bullshit! It is very far from fine!

I know there will be children on every centile but surely as low as that (0.2!!) is pretty much those failing to thrive? I feel very powerless.

The thing is unless specialised in paediatrics, a lot of doctors don’t have a clue about a lot of things baby related. Especially feeding.
There could very well be a link between allergy and ethnicity. I’m mixed race myself so my baby is only quarter but could be something. There’s also a link between cmpa and antibiotics so if either the mum had them during labour (which I did) or the baby has them shortly after birth, research has shown there might be a link between the two.
We were incredibly lucky to have had him diagnosed pretty early on around 8 weeks. However, it took me pestering 4 different GPs until eventually one said yeah ok it could be but most kept saying it’s normal for babies to cry. Even my partner and MIL were just believed the doctors and would say to me oh it’s colic, this is normal but I was right in the end.
we do also live close to Alder Hey Children’s hospital who have been invaluable in helping us through everything.
My baby was the most miserable baby before getting on the right formula. Cried constantly. It was hell so I do understand your worry. My boy was also born 75th percentile and dropped quite quickly because of the allergy.

@Pizzaandsushi It's really interesting you say that about the antibiotics, as actually he was on them immediately from birth as the forceps cut his poor little face. I've never heard of that link before.

Weirdly he doesn't seem to cry a great deal, apart from when they're feeding him he's fairly settled, sleeps well etc. You'd think he'd cry all the time if he's suffering tummy pain. My brother did - mum says she couldn't put him down for 2 years, he just clung to her like a limpet and cried.

Anyway, I will tell them very firmly (again!!) to insist on a referral. I just can't believe the nutritionist. She said she would refer to a paediatrician but there's no point as 'They'll just tell you the same thing'. I'm so angry with her.

@Pizzaandsushi So just to check, did your GP refer to a paediatrician, or to the infant feeding team, or both? Could they go to a private paediatrician and ask for referral to the feeding team too?

So the GP who finally listened put in a referral to the infant feeding team but in the meantime put us on a trial of hypoallergenic formula called Nutramigen 1 which is still cows milk but broken down so hopefully the body doesn’t recognise the protein. She did this as it takes a few weeks to properly eliminate dairy from the system and so by the time we saw the infant feeding team we were already one step ahead.
We noticed an immediate improvement with the Nutramigen but after a couple of weeks symptoms came back and he’s now on a fully synthetic formula called Neocate which was successful.
Nutramigen is slightly cheaper than Neocate so you could try purchasing 4/5 tins from a pharmacy or online (unfortunately not sold in shops) and if there’s a difference it would be great evidence for the GP and backup needing a referral. Unfortunately a tin is half the size of standard formula so lasts 2-3 days and is the same price for half the amount so wouldn’t exactly be cheap.
I would also say that at 7 months and with what sounds like a feeding version already getting a baby to drink it will be very difficult. It smells and tastes horrible and works best when given young enough they don’t know any better so another option might be to focus on getting help with solids and getting a really good diet with that so milk (and other dairy) can be removed that way. I also recommend getting the book “Your baby’s bottle feeding aversion” by Rowena Bennett. It’s basically THE book on bottle aversions and explains how to get rid of one.
I’m not sure about whether private paediatricians can do referrals to infant feeding teams but I don’t see why not. The issue might be more whether you need a referral from a normal GP to see the private one as round where I am, even if paying privately you have to have a GP referral for certain things.