I feel that there is something not quite right with ds

[summersflowers]

Ds is seven months old. When I had him, I knew I wanted to breastfeed. But when I tried to feed him he struggled to latch. We had an absolutely awful night in hospital with him latching, then falling off the breast, getting frustrated …

When he was weighed at day 4 he’d lost 12% of his birth weight and he was put on a feeding plan which obviously pretty much signalled the end of breastfeeding, although I didn’t want to give up. I thought it might be a tongue tie so found someone private to snip it but it made no difference - he just couldn’t latch on.

Eventually I gave up. But for months he could only tolerate tiny amounts in bottles. At four and a half months he was still having the same size he had as a newborn and he just couldn’t manage any more. Even then he’d throw up a lot.

The HV weighed him at 5.5 months and unsurprisingly he’d dropped a centile. He still can’t have more than 5oz at a time. She recommended starting to wean him. And just as with the breastfeeding, it isn’t happening. People say cheerily things like ‘oh my baby was the same … have you tried giving him bits of toast he can hold?’ They don’t seem to understand he eats nothing. Give him a bit of toast and he holds it then drops it and shows no interest in picking it up again. If I try to spoon feed him he clamps his lips shut.

Daytime naps are fine but night time is awful. He wakes and refuses to go back to sleep. He’ll fall asleep on me and then refuse to go back in his cot. Last night he screamed hysterically even though I was with him holding his hand. Again most babies I know are doing longer stints by now.

It just doesn’t seem quite right to me. He’s a lovely baby. But something isn’t right.

Similar to my DD. Omeprozol wasn’t strong enough. Ranitidine did work though.
You need a gastric referral. Dd was allergic to dairy, eggs, had reflux. (Which was both an allergic reaction and a result of her throat muscles not working properly). Also asthma which meant she never slept unless sitting up in her pram as she was struggling to breath lying down. Reflux can cause a lot of pain even if no vomiting.

She was 75th percentile at birth and dropped to under 10th. Admitted to hospital age four to ‘rule out’ stomach cancer. I was dismissed over allergies for years and wish I’d followed my instincts as diary and egg free diet improved things massively. She will always be careful with how she eats but after altering her diets she was soon a healthy weight. Sorry OP but as others have said you’re going to need to push, its sucks.

I know it's frustrating with the doctors but keep trying. Now you've voiced it you know you have to pursue it. As long as your baby is having wet nappies he isn't dehydrated which is critical. Just stick with milk and keep trying dr and hv until you get seen.

I have a ff reflux baby with a small appetite, not weaning yet. My first was bf and no reflux so I’ve been learning from scratch. One thing I found helpful was the growth curves at www.cdc.gov/growthcharts/clinical_charts.htm which are based on a sample of mostly formula fed babies and show slower growth in the first few months and faster growth from 6-12m compared to bf babies. It showed me that compared to other ff babies, there was not really the centile drop I had worried about.

I've had a nightmare with my eldest DC who was and remains a fussy eater with a very select list of things that are allowed to pass his lips. We had reflux and colic and everything else you can think of. A Paediatrician is where you need to be- only a GP or HV can make a referral.

I get it- my DS didn't eat a thing until he was 13 months. People who haven't had a child that doesn't eat will find it hard to understand or believe when you say he literally doesn't eat anything. In one of my lowest moments I managed to put a pea on his tongue and he was so distressed he vomited. He also didn't sleep and was delayed on his physical milestones.

For him it turned out to be severe food allergies causing reflux. The term they used was oral defensiveness- where reflux/allergies have caused so much discomfort they can't tolerate any food. We also had some sensory issues with touching food. What helped was much stronger reflux medication which we had to get on a private prescription (gavisvon was useless), occupational therapy to help with the sensory problems and blood and skin prick tests to identify his allergies and remove them from his diet and environment. I would start with the allergy testing as they can refer you on for everything else- these issues are often linked and the paediatric allergy consultant will help you work out what other help is needed.

Babies at this stage are very oral- everything goes in the mouth. Have you tried leaving things like Cheerios or other crunchy things around where your LO is playing so he can taste them in a non-feeding environment? What are his nappies like? How many wet/soiled nappies does he have in a day?

How hot is it where you are? I'd be worrying about dehydration.

We also saw a paediatric nutritionist privately- she'd written guidance for the government and had several books published so I knew we were in 'safe' hands. She told us that some babies were born with a sensitive palate and it took longer to wean them and a lot of patience. She was of the opinion if DC didn't eat, I should take the food away. Her biggest thing was we shouldn't make food/eating an anxious thing/time.

She didn't cost much at all. If you're in London (or the surrounding areas), let me know and I'll be happy to share her details. Might be worth a chat with her or someone similar.

@Lougle

How hot is it where you are? I'd be worrying about dehydration.

Absolutely. Three or less and you need to take him to A&E.

I wonder if you could speak to the paediatric dieticians at your local hospital for advice or seek a referral to them. I understand that this is normal for him but if he is not having regular enough fluids that is a medical emergency especially in a heatwave.

Hi OP.

My LO was similiar. It got to 10 months and she still couldn’t drink more than 5 oz. She was just about taking 4oz. Most times its was 2 oz. had to frequently offer as clearly she couldn’t drink much in one go.

She used to wake up at night because she was hungry but still wouldn’t drink.

The only thing that saved me was dream feeding. Gave her bottles when she was sleeping. Just before I knew she would wake up. Just after she went to sleep for night and during the day during nap. It was so stressful!

Started taking away the bottles when she started on solids.

She will be 2 and still doesn’t drink milk.

A baby who is not eating or drinking enough warrants medical attention, however you get it. You can't just 'give up' on trying to get medical help.

Try phoning the GP surgery at different times throughout the day or just turn up there with him. If you really cannot access a GP appointment then it will have to be 111 or A&E. You can't mess around with a baby who may well be dehydrated in the middle of a heatwave.

Forgot to mention with solids she went through a phase where she tossed everything.. it gets better.

Also try yoghurt and fruits. My LO loves fruit and when we first started weaning she used to grab the fruits.

I haven't RTFT but has anyone suggested carobel OP? My son has it with every feed. It thickens the milk, without it everything comes back up and he stops gaining weight. Weve used it for a few months and it makes a huge difference. It's helped with his gas/ colic too so he's much happier.

This is very confusing. You haven't seen a doctor, a GP locally - why not? All you need to do is say my baby is not feeding I'd like an appointment today please. If they fuss about it say no, I'd like an appointment urgently.

Then ask the GP for a referral to the paediatricians at the local hospital, again if they say no, make a fuss etc., you say I'd like that referral please. Take someone with you to back you up, a relative, your partner whatever.

I’m not sure this is helpful to you OP. You post a lot about your son, about his eating and sleeping but people’s advice just irritates you, probably because there is a range of standard advice about feeding and sleeping and of course you’ve tried that already.

Nothing you say about your son suggests he is outside the broad normal range of seven month old infants. He prefers to sleep with you holding him, that’s pretty normal for a fair few babies. He’s not interested in weaning, also very normal, quite a number of babies don’t get interested in solids, purées or finger foods until around 10 months. He’s a poor bottle feeder, again difficult to live with but common in babies with reflux and he’s not losing weight dramatically. It sounds like his temperament is on the difficult end of normal but there’s no blaring red flags.

That’s not to say there’s nothing underlying and as people have said CMPA is the obvious one (70% of babies with reflux have CMPA) and this is an easy thing to check by cutting dairy out of his diet. However it’s unlikely anything will be a magic bullet to explain him or solve the difficulties. Most doctors, specialists or GPs will take a wait and see approach until something presents itself eg a significant weight loss.

It does sound like you feel very responsible for getting food into him and that’s also normal when you’ve had a difficult start with feeding and people have been telling you to get so much milk into him and weighing him to check and it’s all been medicalised. It can be difficult to move back towards a healthy feeding relationship. It might be worth remembering the division of responsibility in relation to feeding.
Your job is to offer a range of foods you’d like him to eat, in an accessible way and it sounds like you’re going above and beyond in doing this
His job is to eat it or not and that part of the job is beyond your control.

Might be worth dumping the books that say what he ‘should’ be doing and even getting out of your head what he ‘should’ be doing. There is such a broad range of normal and it is very stressful if your baby is not achieving what you think he should. Sleep for example is not a developmental milestone so there is no should in that at all. Anything goes. Feeding is a developmental milestone only in terms of growth (which you’re monitoring) and nutrition (which is not a concern for a milk fed seven month old but may become
a concern if he’s still not eating at 10 months so you could shelve it until then)

If ring and ask for an urgent appointment with a gp for a baby they will always give you one,even if its a phonecall.

My eldest refused to breastfeed at all while awake from 10 weeks. :( I had to dreamfeed her during every nap and throughout the night, which was exhausting and horrendous to the point that I became very depressed and anxious about it, but somehow we got through. She had a posterior tongue tie finally diagnosed at 4.5 months and had that cut. I assume your son has been assessed for posterior tie if he has seen a specialist? They're a little different to conventional ties in that you can't see them, only feel them via palpation of the underside of the tongue, or the use of a grooved tool to pop the tie out of hiding. They can cause all sorts of problems and because not many professionals are clued up on them in the same way they are with grade 1 or 2 ties, they often go undiagnosed, leading to lifelong problems with food and diet in some people. Since they can also appear in conjunction with more traditional ties, practitioners who are unaware of the existence/implications of posterior ties will not cut far back enough to fully solve the problem.

Just a thought. Unless you're absolutely sure posterior tie was looked for and ruled out I'd definitely give that another shot. If you're anywhere near Cardiff I can recommend a brilliant practitioner who will be able to tell you once and for all.

Cutting my daughter's tie did help - she finally started to feed awake from about 6 months, though we had to do it lying down while she learnt to cope with her new mouth and my rather aggressive flow. By 10 months everything was much better, though she took a very long time to chew solid food properly, going waaaaay past the age she should have started doing it (I had a SALT come to the house to assess her in the end, who determined she was ok, just on the later side and gave lots of helpful tips). However, she didn't stop choking frequently on water/start drinking out of an open cup until she was almost 5! That was a huge source of anxiety for me, but again, we got there in the end.

I still don't really know for sure what caused it all, but as well as the tongue tie, I think she may have had some problems with her tonsils and adenoids, as she is prone to rhinitis and eczema. With age, though, both are improving.

She's 7 now - no lasting difficulties with food or drink, speech impressive, development completely normal.

I can see you're really anxious about this and I would be too. I, personally, would stop worrying about solids too much for now, as he is still young, and start trying to get as much milk into him as I could via dreamfeeding if at all possible while working on getting to the bottom of this. You could start by getting the tongue checked again if necessary, then if it's not that, maybe you could see a SALT in case it's low oral tone or something in that ball park which is causing these problems. You say he struggled to keep a hold on the breast - this could be caused by both tongue tie or issues with oral tone. You also say he won't take more than a little milk - again, if he is getting easily exhausted as he doesn't have the oral power to maintain a grip on his bottle for the duration of a feed, this could imply he needs some help strengthening his mouth muscles.

Again, just a thought. Our problems were not as bad in the grand scheme of things as this sounds for you but still I felt utterly devastated over it, so I can only imagine how you must be struggling right now and I wish you the best of luck.

@Hoowhoowho I’ll be totally frank here, posts like that aren’t helpful, even if the thread overall is, posts like yours leave me feeling terrible.

I’m sorry if that comes across as rude. I don’t think I’ve been irritable at all, and where a post might sound as if it could be read that way I’ve taken pains to say ‘please don’t take this the wrong way / I’m not meaning this rudely.’

Of course I post a lot about my son. I’m on Mumsnet. And just now I am worried. He isn’t engaging with weaning or food, he is screaming for hours at a time at night (yes, I get that he prefers to be held, but when for several months prior to this he’s slept in a crib you do wonder) and he is still taking in less in a bottle than most other babies his age.

And so I read posts like that and I think I have to keep my lip buttoned, as otherwise everyone will think I’m a neurotic mother. And yet I’m not. I’ve swam in open seas, travelled alone and walked around strange cities and countries without a backward glance, gone sky diving, scuba diving, skiing, horse riding. I hope ds enjoys some of these things too. I know I’m not a nervy type.

I would like nothing more than to someone say there is nothing wrong with this baby, but a baby not showing any interest in food is unusual judging by the (many) babies I know and so I do want to check out what is going on.

Thank you to any other replies and I am sorry if I have sounded irritable. I’m in quite a remarkable amount of discomfort coupled with no sleep for two consecutive nights PLUS the heat and this may have unintentionally been conveyed and please accept my apologies if so, not intended.

My first was like this.

She was very unsettled and wouldn't feed.

Even when 6 months old she would only take around 3.5-4 oz of milk every 3 hours or so.
But she carried along her centile. And I persevered.

At 6 months old we started weaning. And then she wouldn't eat. But would drink her milk. So still about 3-4 oz of milk.

Very fussy eater. Refusing meals. Difficult to get her to put anything in her mouth and if you push it she would be sick. She had a very active gag reflex. So a lot of vomiting too.

Again we just persevered.

She started school. We told teachers she doesnt eat much- they told us they'd seen it all before and she'd be fine.

Every day at the end of school the teacher would tell me- oh she hasnt eaten much is she ok. She didnt eat much and seemed quiet. Just shrugged my shoulders what can I do?
They suggested getting her a packed lunch- but there wasnt any point because she didnt eat anything we could pack anyway.

Towards the end of reception year they stopped telling me she wasnt eating. It took almost the whole year. And now she loves her school meals. Her other food intake is still very poor.

I also has loads of people giving advice on what to try to make her eat better. But in the end I knew I'd already tried everything.

Now I've noticed at night if she has had a heavy meal she seems to get food reflux- I'm getting this investigated.
Still waiting on an appointment. But just wanted to share my story. She is much better new-style very fussy, but it did take time

My DD was like this and she turned out to have severe food allergies. I honestly think it was some kind of survival thing, to refuse all food... She breastfed well though so I didn't have that worry. I feel for you massively.

I don't think she actually ingested more than a spoonful of food before 1 year. She didn't finish a meal til gone 2. I was so incredibly stressed by it.

See a private paediatrician, ask for allergy tests, and get them to refer you back to the NHS for a dietician and OT. Best of luck.

Are you able to ask your local pharmacist to order you in a tin of amino acid formula (some pharmacies might already have some in stock if you ring around)? Thats something like nutramigen-pureamino or alfamino or even neocate? It is expensive but it is a test for CMPA. If it helps its one if the processes used to rule it out. If it helps it is a cows milk allergy. It can help give a solution. Once the baby's tummy is calmer they will stop associating food with pain so maybe its worth a go? It might help, I'd say its worth considering in this situation if you can. Good luck. Child stress is just awful, even worse when they are babies .

Hi op. I want you to know your concerns are totally valid. I can see you've tried lots of things and are desperate for answers. I remember the fear so well.

My only suggestion, and forgive me if you've tried, is to totally change the way you address food/milk. If there's a medical problem then I doubt this will work but if it's a behaviour/learned problem (perhaps from the pain of reflux when he was younger) then he just may associate food with bad things.

I would try being creative. By that I mean, make up some jelly and sit him on the floor on a plastic mat or similar and play with the jelly. Smash it, squish it, eat it. It's a game. It's not 'food'. Similarly chips up tiny colourful bits of soft fruits and cooked veg and leave it by him while he plays on the floor or while he plays with you. Make games out of food and totally get rid of 'meal times'. Offer him a small drink of milk from a beaker or small cup. Play 'imitation' games where you copy each other - like you touch you face, clap your hands, sip your drink etc. Things that make it fun and nothing to do with eating. I think trying something completely different will help you see if it's behavioural or medical and even more it should help you to reduce your stress around mealtimes which can exacerbate it. Also, will he eat 'treat stuff'? Does he, for instance, like ice cream or chocolate? I'm not suggesting you feed him that regularly but again if he will eat that sweet bad stuff again it helps you see if it's medical or behavioural. Good luck op

I would get them to check for CMPA, it could be that he doesn't want to drink milk as it is uncomfortable (friend's baby with reflux and colic wouldn't drink milk as it was uncomfortable for him). How are his nappies? Loose poos could be a sign of an intolerance or allergy.

Another friend had a baby with reflux, gaviscon didn't work well for him and the local GP wouldn't prescribe rantidine like her old GP.

The bad sleeping sounds like it could be due to discomfort?

Keep nagging the GP until you get seen or DS gets a referral to a paediatrician.

I have a non-eater too, mine will only drink milk so a different situation to you. She nibbles at food like a mouse. No matter how many times I offer it, nothing changes. She is a toddler and still barely eating.