2 yo ex-prem that won't eat!!

[Evasmum12]

Hi everyone, sorry to jump straight in with a massive post but I could really use some advice and maybe some perspective!!

Don't really know where to start with this, I think it will be v.long so please bear with me!

My DD was born 12 weeks prem, she was NG fed from birth (a tube through her nose to her stomach) and then introduced to bottle feeding at around 9 wo. She was always good at drinking her milk and slowly put weight on.

As soon as I started weaning at 6 months I knew something wasn't quite right, DD had absolutely no interest in food whatsoever. I tried and tried to get her onto puree and baby meals but even the smallest of illness or upset and she would refuse food for days, relying on bottles of milk to fill her up.

Any issues I had about her poor weight gain was blamed on her being prem. Any concerns over her lack of appetite was also blamed on that. I went to HV, GP and spoke to people at the weighing clinics, and was told DD was fine and to persevere. So I did.

For the next 18 months every single meal was a battle, she refused to chew food properly, trying to swallow it straight down and then choking and refusing any more, anything that didn't eventually dissolve in her mouth she spat out or choked on. (Sorry to confuse but she CAN chew and swallow food, I have seen her do it, but she chooses not too iyswim?)

Soo eventually the routine went like this: breakfast of very milky weetabix, lunch of soup, tea of soup and yoghurt/custard. Bottle of milk before bed. I offered her snacks through the day, anything and everything that I thought might tempt her but no, she dosen't even eat chocolate or crisps.

I feel like I've tried absolutely everything, where, when, what and who we eat with.. and she just simply isn't interested.

So anyway, she was underweight and I was very worried about her, just before Xmas last year she started getting coughs and colds, her eating got even worse and still I couldn't get a health proffesional to refer her to someone that could help. In Feb she ended up in hospital with Pnumonia and was very very poorly. She was far too ill to eat by then and was losing weight fast so we started NG feeding her protien drinks. She recovered very slowly and over the next few months I just concentrated on getting her strength back up and her weight up.

She has recovered now, and I know have a dietitian, SALT, consultant and community nurses monitoring her.. but they all just seem to want to PEG feed her and be done with it. I feel like screaming because I struggled so long on my own and I felt I was making a tiny bit of progress before she became ill. I feel like they have come in 2 years too late and are not willing to look into WHY she is like this.

I know she needs the protein shakes to help her and she will drink them, in her own time, but the powers that be have given me just 4 weeks without the NG to get her drinking the shakes (which are foul btw) and eating again before they do the gastrostomy.

Has anyone been in a similar situation!?? I would really like to hear from anyone who has DC with gastrostomys because they won't eat etc.. and thanks for reading :)

[TwelveLeggedWalk]

Hey. You poor thing, that sounds horribly stressful for both you and LO.

My DTs (30 weekers) are only 10 months old so no real experience to pass on I'm afraid, but one idea that occurs to me - and I may well be talking complete baloney - is have you had her teeth/gums checked? I read that ventilating/extubating premmies can cause teeth and gum problems (something I've been concerned about as mine seem very late to sprout them!) and just wondered if that's what\s making her reluctant to chew?

REally hope someone with more experience comes along to help you out soon.

[Evasmum12]

Hey twelve, thanks for reading, I hadn't thought of that but she does come to the dentist with me and they have never said anything.. I will look into it though!

And sorry for the explanation of NG - posted on another thread too - I'm sure none of you needed it!

[Handsfullandinamuckingfuddle]

Hi Evas mum - another Mum to 30 week twins here.
Sorry no first hand experience - but bumping for you.
I found this hope it will be some help - sorry if your already on here. Had a quick skim of thread but couldnt see your name.
Good Luck

[SomethingSuitablyWitty]

Very sorry I haven't much concrete help to offer, but a lot of empathy. My DD 20 mths, is a shocking eater too and that's despite never having to cope with the kind of issues your little DD has got through! You sound brilliant btw and if you hadn't been thwarted by the run of illness, sounds like you were making good progress.

DD also shows no interest in food (though we are lucky that she apparently eats fairly normally in nursery which I literally find hard to imagine, but they tell me it's true, so her weight etc are not really a worry), but her diet at home sounds similar to what you were offering, except that she started refusing soups a while ago. Like you, it started from the very beginning of weaning and there is no trick/ idea or approach we have not tried. She also has a will of iron.

Things she does willingly eat, in case any of this might tempt your DD:

• squeezy packets of fruit puree, which she can hold and suck herself
  
• Nestle baby yoghurt (never fails - I mention the brand, because I think it is actually sweetened a bit, so maybe not the healthiest, but she wolfs it down)
  
• Bread sticks and dippable cream cheese and most other crackers/biscuits/ rusks/toast/bread etc.
  
• We also put a decent few spoons of baby porridge/other cereal into her bottle morning and night
  

For the protein drinks, is there anything you could disguise them a bit with? Like Yop or Yakult or something? These are a bit sugary I know, but that's probably not your main worry. Or even combine them with her milk?

Wishing you loads of luck - I've been finding it soul-destroying, so I can imagine with serious health worries thrown in the mix, you are absolutely at teh end of your tether. Hugs to you.

[Evasmum12]

Hey hands thanks for the bump, and didn't notice your link first time but I have found the gastrostomy thread now, thanks :)

Hi something our DD's sound quite similar!, does your lo put on weight? Does she hve a SALT or dietitian?

I've tried the pouches but she wasn't keen, Peppa Pig Yogurts are the winner in this house, and yep she will munch a breadstick!! Lol.

Have you tried the flavoured custard pots?

Also when she does occasionally demand choc choc, chocolate porridge sometimes works.

As for trying to disguise the Frebrini shakes, it has a very strong strawberry smell so she always knows if I put some in her milk, and then gets suspicious of everything else I give her, dosen't help that I have to put her meds in her yoghurt, she's too bright for her own good lol.

[SomethingSuitablyWitty]

I'm not in the UK, so the range of products available here are not the same. But yes, I've tried custard/puddingy stuff when visiting family and it was a success. Hmmm - do you think rice pudding would be a runner at all ?(note to self: try this also!).

We are lucky enough to have not had any weight issues: mainly, I suspect, due to the fact that she eats at nursery - fairly normal (though still largely pureed) food and portions. She keeps the Diva behaviour for home and anywhere else that is not nursery basically. After nursery, we give her a biscuit on the way home (have found wholemeal ones sweetened with grape juice that she accepts: oatcakes etc are not deemed acceptable). We follow up with a yoghurt and toast at home and milk and cereal before bed. Her size and weight are the lower end of average, but she's following her curve. I have been to a paed about it a few times, expecting a referral to a dietician/someone else with ideas, but because it is not medically very worrying, the advice seems to be to keep offering, keep having family meals and plough on basically.

I'd give the pouches another try. They were rejected out of hand here at first, but she has got to like them and once a food is on the acceptable list, there's no problem any more.

I know about the 6th sense for detecting foreign elements in the milk/yoghurt, and you definitely don't want to mess up the few staples that she'll take. My DD is also sharp as a tack on that stuff. Any chance you could get a less flavoured one, intended for adults maybe and find something to mix it with? Does it exist in chocolate flavour, if she likes that?

Some kids accept things when they're distracted by videos on YouTube or something? Not my DD as a matter of fact, but I've seen it work for others.

Anyway: I hope you're not too discouraged and you're making a bit of progress!

[Rachstrawberry]

evasmum that sounds exactly like my 19month old DS, no interest in food whatsoever except 4 or 7 month baby jars, yogurts and milk. It was so stressful seeing all the other children his age eating everything but he would gag and vomit on anything solid then refuse to eat it... Even soft things like banana or sandwiches. I knew he could physically do it though because he would eat mcdonald chips so all was psychological. He flat out refused protein drinks (don't blame him tbh!). We just did as you have done and fed him whatever he will eat while offering other food. Even though he didn't eat it i figured it was positive when he started picking up the food and looking at it, feeling it etc. then 2 days ago i sat him in his highchair with a chopped up chicken nugget and was reading a paper (found it best to distract myself whilst he is 'eating' or we both get very stressed) and he ate the whole lot!! Still waiting for a repeat performance but perhaps your LO will do it in her own time too? Cant you just refuse to have the gastrostomy then they will have to support you with feeding? It sounds like she is having a fairly nutritious diet covering all the food groups with the things she will eat?

[crazymum53]

Have been lurking here for a while and wondering whether to contribute. Most of the replies so far have been from mums who still have relatively young dcs whereas my dd born 13 weeks prem is now 12 years old - so hopefully my experience will help.
Yes I did have similar problems with weaning - but in my day they recommended starting weaning babies at 3 months so this was started when she was 3 months (corrected) even though she still wasn't much bigger than some newborn babies. dd would have been happy with just formula milk and this was being supplemented by added protein powder and extra vitamin drops to make it more filling (which probably made solid food even less attractive). She did eat some solid foods, but in very small amounts, and was referred to a dietitian at approx 12 months old. The main advice was to make sure that each mouthful counted by adding extra calories such as cream, cheese, sugar etc. to maximise the nutrition from each mouthful. My dd loved cheese and egg and recipes such as eggy bread (sliced bread dipped in egg and cheese and fried) did work even though she only ate small amounts. Progress was VERY slow but she did make it and was eating a more or less normal diet by the time she started school, although she was still small compared to other dcs.
The diet she is having sounds OK for younger dcs but you do need to add more protein and hopefully the dietitian will be able to help you come up with more constructive ways of doing this other than just tube feeding!
I really wouldn't blame the diet by itself for the illness and pneumonia though. My understanding is that premature children (particularly if they have been ventilated) have weaker immune systems and are more susceptible to this type of illness anyway.

[amymouse]

I might have missed the boat here as I don't come on terribly often, but just short of a second birthday we have had a PEG fitted after querying aspiration and definite reflux and oral aversion. She was NG fed in the lead up to the op, and suddenly starting putting on weight: amazing! I felt very similarly that I had been "left to it" for at least 18 months, or at least not taken seriously by any of the medical team we frequently saw. However it got to a point where when they pushed it again following a serious chest infection not long ago, I sort of lost the will to fight/could really see their point. It didn't look like things were going to change for the better any time soon, which sounds really negative, but was pretty much the picture! DD can eat purees and a limited amount of 'baby' finger food but will literally go months without letting food near her mouth. She was surviving on Paediasure (high calorie nutritionally complete) milk but needed quite a lot to sustain her which meant her reflux suffered and meant that her swallow was more at risk. I am still getting used to the PEG so it is early days, but I already feel some pressure taken off and like it is a relief. DD actually has shown some small amounts of interest in self-feeding since food was essentially taken off the table (haha) so although I have very mixed feelings, I do see the benefit and they can also be taken out. I hope you come to a decision you are hapy with xx

[TwinsMum10]

hi can you private message on here?
this is actually my current situation....so much so i thought someone had posted on my behalf!