Struggling with an 8 month with oral aversion

[MelanieK123]

My daughter has severe oral aversion which started at the age of three weeks old with what I know are symptoms of cows milk allergy.
Despite me taking her to the Dr's constantly and having had numerous visits from the health visitor, this was not diagnosed until she was four months old and after five hospital stays due to her poor feeding and lack of weight gain.
She would scream when presented with a bottle, arch her back and she had diorrhea, severe vomiting, stomach aches, colic and was covered in excema. She was put onto a hydrolysed formula but still the stomach aches and vomiting continued. Due to the amount of hospital stays she had she was discharged with an ng tube to be used only during an episode of refusal.
In January I was desperate and managed to persuade her dietician it wasn't reflux to put her onto an amino acid based formula. The physical symptoms disappeared instantly but to my horror she appeared to dislike the taste and would scream and fight me if I put it anywhere near her. She also stopped showing any sign of hunger and would rather starve than drink.
Eventually after months of struggling a speech therapist came to see us in March and told us to stop trying to bottle feed and to put all milk down her tube and to concentrate on weaning her. They then discharged us.
I have been trying since she's been 4 months to wean her. She will mouth toys but when presented with food she is reluctant to pick it up let alone put it in her mouth. In the last week I have managed to get a spoon of purée to her mouth but this relies heavily on the TV for distraction and her toys.
We saw her peadiatrician last week. He spoke to us about a g tube insertion straight into her tummy I feel this is moving the problem rather than addressing it and solving her aversion.
He has also re referred us to speech and language as he felt we shouldn't have been discharged. This is likely to take another few months to come through like the original all the while when I have a baby who refuses to eat. I feel a bit desperate for her I eat and really isolated as I don't know anyone experiencing anything similar to me. Is there anyone out there who understands?

I'm sorry your having such a tough time. I don't have experience of oral aversion, but I do understand a tiny bit about how upsetting something like this can be, as DS was tube fed for the first few weeks of life.

In your position, I would also be querying why your paediatrician is looking at g tube without apparently offering you support for treating the aversion itself. Have you tried accessing support and advice elsewhere? I know there are tube feeding charities and support groups who might have resources.

It may seem an obvious suggestion that you've already considered, but if she will mouth toys, have you tried making food more toy-like? Offering finger foods away from the table, maybe even mixed with toys? So it's play that she controls, rather than pressure to get a spoon in her mouth?

You could also try posting on the special needs board, there are lots of people there with experience of tube feeding.

Good luck.

Yes Melanie (((( Hugs)))) and We had similar with DS2 due to severe reflux. He developed a severe oral aversion and was wasting away before our eyes. It was terrifying.

In case any of this helps you, I'll pass on the tips that got us through.

Don't ever try to do things the way other people do or follow their weaning plans or judge yours against theirs. Your DC has very different needs and the solutions may well be the exact opposite of typical good advice on healthy weaning..

The most important thing is to get the highest possible number of calories into each spoonful. DS would take 2 5ml spoons of food a day. We used to mash up avocado with banana, as 2 spoons of that was equivalent to half a pot of something else.

Don't worry at all about giving 'unhealthy' food. The most important thing is to get her to like food, to enjoy it. Try sweet things, and textures she doesn't yet associate with food. DS would chew on a cream cracker coated with cream cheese and jam. He wouldn't eat it but some would go in. Or he'd try ice cream. Those are both dairy but you could try non dairy ice cream or get her tested for peanut allergy and if she's OK do PBF toast or PB and mashed banana. Don't expect her to eat it, just to chew or suck on it. Add sugar to purees, or a drop of olive oil - anything to pack more calories in.

When she's old enough try baking a very high protein cake. I made up a recipe of soy flour, almond flour, lots of eggs and sugar. You could use non dairy marge instead of butter. He'd eat a mouthful of that a few times a day. (Though maybe not at eight months.) It's crumbly and melt in the mouth, but you'd need to check on egg and almond allergies first.

One thing I did was make up pots of tiny bite sized pieces of food and carry them round all day, popping them into DS's mouth when he was playing and not aware food was going in. Wholemeal bread with dairy free spread cut into tiny I cm square sandwiches or those Organix Noughts and crosses which are quite high fat irrc.

At mealtimes I only brought out treat foods - ice cream, biscuits, anything he'd willingly eat. This was to get him to associate sitting up at table with pleasure. When he was watching TV or playing with toys I'd just tuck miniscule morsels of healthier food into his mouth all day long. This really helped. he'd never sit down and eat what his friends would eat but over the course of the whole day if I 'posted' all the time, enough would stay down to keep him alive.

Don't worry about sugar and teeth. Their milk teeth don't last and sugar is an appetiser that makes you crave more. In emergency cases like this, that's a good thing.

It was a VERY slow process. He was absolutely tiny for years. He ate the same food day in day out for about eight years. We worked out that as long as he had something from each major food group it didn't matter what it was. When he started primary he was still bald with baby hair and wore age three grey shorts as trousers because they went down to his ankles. He's now tall as me aged 12 and really well built and loves his food.

Sorry this is so long. I just remember how tough it was. Hardest time of my life and I wouldn't wish it on anyone.

I really hope things work out for her and for you.

Thank you both for taking the time to reply. I could have cried with relief when I read your messages that you understand what I'm going through.
I will try the special needs board as I didn't think of that.
My DD receives care from a paediatrician, a dietician and a speech and language therapist although waiting for the referral again. When I speak to the peadiatrician I strongly get the impression that he is just concerned that she is healthy from a medical perspective. She is solely tube fed and has no adverse symptoms from her milk now so her weight is no longer a concern. He doesn't really seem to care that she is not feeding orally. Just feels that it is the concern of speech and language although they have discharged us after only one visit.
I forgot to mention that I have been trying desperately with finger foods for months and now gone back to purees in desperation as she seems to know exactly what the difference is between food and toys no matter what I give her.
I have given her some of the most random things meringues, pink wafers, jam etc. it has got to the point where she completely ignores them and will not sit at the table in her high chair or bumbo so I now try to feed her on her play may surrounded by her toys.
I think another aspect of her aversion has come from the number of hospital stays she has had. She was very seriously ill when she was little from her allergy and before they were going to do anything nasty like the lumbar puncture or a canula she would be given sugar water. This was the case with all her subsequent hospital stays so I think she now associates sweet things with pain although I have tried both sweet and savoury.
When I have managed to get the puree in her mouth she seems unable to swallow and just gags or spits it out- I'm not sure whether she has forgotten how to swallow or suck since only being tube fed.
Thank you for all the tips. I will definitely try going for high calorie spoonfuls. I also love the idea of trying her throughout the day with tiny bits of finger foods. If she's playing and not really paying attention like you say something must be going in and it will take the pressure off me and her sitting there trying to come at her with a spoon and doing a whole meal.
I really appreciate the advice you give about not comparing my daughter with others of her age. People in my Antenatal class talk a lot about how well their babies are doing on solids and feel like they think I have done or am doing something wrong for her not to eat.
You've given me hope that we will get there eventually and that there are others out there who have experienced or are experiencing the same as me and that I am not alone.
Thank you both so much I really appreciate it xxxxx

I think some doctors can take the easiest route if it's technically working, even if it's not necessarily the best route for the bigger picture.

One consultant told me that in the NHS you have to seek out the opinions and advice that suit your view and get those people on side. Does your hospital have an infant feeding specialist? I wonder if someone like that might be able to help you access other advice?

Have you come across this group -www.facebook.com/groups/1395095227396948/ - it's a group of families campaigning for better support for tube weaning. I wonder if posting there might get some good advice too.

It sounds like you're doing an amazing job with huge dedication. It might feel like you're not making progress, but if you're getting her to take even tiny amounts of puree then you certainly are.

Hi Cobo,

I haven't been through what you're going through but thought I might make a suggestion based on a lot of years of working with babies and children, a few of whom have had much less severe feeding issues than your DD.

Working on the principle of starting where the child is, I would try to take advantage of the fact that, although she won't put food in her mouth, she will mouth on toys.

I understand that you need to get calories into her and you are using distraction to get her to eat in a passive kind of way but that does seem to be gradually getting more difficult as she associates more things with being fed.

Are you able to keep a place like her playmat or similar as somewhere that you never, ever put food in her mouth? If you can, you could use this place to introduce food as toys to explore, especially new foods that she won't recognise so she has a chance to explore and mouth on it with becoming anxious or realise it is anything to do with what she currently recognises as food and all the baggage that comes with it.

I'm thinking of things like a plate of jelly to splash in, sweets that look like toys, cold spaghetti, open packets of crisps, bread sticks, etc. If you identify any textures she enjoys exploring, build on that by offering something else similar.

Thanks for your suggestions everyone. I will contact that Facebook group. That's really helpful. I might also have another conversation with my paediatrician about seeing if there's an infant feeding specialist at the hospital. I'm lucky as I live in a big city so my DD is under the care of the children's hospital here.
I really like the idea of her playing with foods that she doesn't recognise away from where she normally feeds. She has another play mat that I don't feed her on so will give that a go.
I will give the jelly a go along with the spaghetti and crisps and maybe some dry cereal. I was also thinking about marsh mellows but will check their milk content first.
I'll also try the little and often approach with food.
Thank you for all your advice I have a renewed sense of purpose and am full of hope today.

I had a very stubborn DD who utterly refused to have a spoon in her mouth, totally refused bottle feeding and was not keen on the whole weaning process!! Nothing at all as extreme as your situation, but I learnt a few tricks that might help.
Do things on their terms not yours so don't worry about 'meal times' or 'healthy food' etc go with what they might express an interest in when they show interest.
Try and stay calm and relaxed, and not let it show that you are worried/stressed/annoyed/upset that they haven't eaten (much easier said than done I know)
Don't make a big thing about food. Try and sit down with the family for meal times and have a relaxed, chatty meal. Have DD on your lap whilst eating and show how much you enjoy eating and the food. Leave tempting little bits on your plate and see if she is attracted to them (in my experience anything off your plate is always 10x better than anything given to babies direct even if it is exactly the same stuff)
Leave bits scattered about the place - little bits of chopped up fruit, biscuits, dry cereal etc on coffee tables or on plates on the floor that she can just grab and play with when she wants to.
Good luck!

Melanie one problem DS had, which was why he gagged on anything going in, especially purees, was that he locked his tongue up against the roof of his mouth, so any food going in actually went into the well under his tongue and couldn't go down his throat. It took ages, over a year, to sort that out. Is it possible that is happening?

Maybe try foods that don't need to be swallowed - try an ice lolly made from frozen pureed banana and mango or foods that dissolve in the mouth. She must actually swallow sometimes, (though DS didn't even do that - he drooled out his saliva and had a permanent rash round his mouth as a result. )

If she associates sweet stuff with pain (poor thing!) try really odd, different flavours. I remember DS eating a chunk of very soft smoked sausage - that stuff which is half way between being salami and pate. I'd never have thought to try him with processed meats but a friend's DP made them and she brought some over. Smoky flavours might work, or pre-stoned olives in oil (not salty ones.) And bizarrely, he didn't mind fish - small flakes of salmon (v high calorie.) Try unusual things. As long as they are not choking hazards, they're worth a go.

Again, all this stuff happened over the first two years. he wasn't tucking in to anything much at eight months, but these were the high protein, high calorie foods we found worked and so it mattered less if he only had three bites a day if they were salmon, avocado and pate.

Another thing we did was have teddy's tea parties, and feed the toys to make a link between food and energy. (Things like, 'Teddy ate ALL his biscuit and now he's got so much energy he's bouncing up and down!' Stuff that makes them giggle.) That helped him see food as fun. And I started to show a lot of enjoyment over food. When he was little I was so stressed I barely ate and never in front of the DC. Then I realised they were learning bad habits from me. So I started relaxing and eating good food with enjoyment. It helped him to associate it with pleasure.

It WILL pass. You are doing brilliantly.

It got a lot easier when I could chat to him about it and explain why he needed to eat. (To grow big like mummy, to have energy to go to the play park etc) That'll start happening in a few months time.

I think Ihave been guilty of portraying my anxiousness and feel sure she has picked up on that. This may have in fact contributed to her refusing to sit at the table or in her bumbo. We were saying to her 'mmmm yum yum' etc all the time which in hindsight probably put pressure on her to eat which in fact made the situation worse. We thought for awhile that she didn't understand what to do with the food. I now know that she understood exactly what it was it just wasn't the right approach so we've backed off a lot.
She had some porridge this morning. She wasn't too bad with this although like you say lastlines I'm sure she's not swallowing. It does seem to sit under her tongue. She just sits there with her mouth open for ages and eventually drools it out or retches although I think she may have swallowed once today by mistake. But she wasn't too bad and quite good natured.
My subsequent attempts to get Apple purée and small bits of cracker in her mouth with avocado smeared on were met with resistance and blocking of her mouth or blowing raspberries although she was in a really good mood and was smiling and babbling a lot this afternoon. She would clamp her mouth shut as soon as she saw anything coming even though I was trying to be quick.
It's a huge challenge getting anything in like an ice lolly so I think it'll have to be either leaving bits around for her to pick up that she doesn't recognise or through playing with food. I do also think she is especially bad with sweeter foods so maybe odd flavours or savoury ones are best to focus on.
We're going to try messy food play tomorrow with her tomorrow.
I would never have thought about the teddy bears picnic but what a great idea!
Thanks again everyone for your suggestions

OP you poor thing what an awful situation for you all. Am furious at the length of time it took to get the cmpi diagnosis, shaking my head that after five hospitalisations you were given a hydrolysed rather than an amino acid formula. How old was your lo when you finally got the aa formula, because after 6-7 months most babies refuse it because it is so vile. All of this could have been avoided. Tbh I would be tempted by the g tube. My dd was born three months prem and had a career worst case of cmpi reflux according to her paediatrician, I ate an exclusion diet so I could bf her which helped as did the highest possible dose of omeprazole. It's hard to feel hungry when you've got awful heartburn. Is your lo medicated? I think the tube would enable your lo to be properly fed balanced nutrition while you work on the oral aversion from scratch, it would enable you to be as relaxed as possible during weaning and prevent the lifelong consequences of inadequate early years nutrition. Id also warn that because of the gut damage caused by the poor management of your Los allergy other food allergies are likely to crop up. Hugs to you all x

I just had no clue in the beginning although I knew something was wrong. I would take her to the Dr's sometimes three times a week and they would just prescribe different creams for her excema, give me gaviscon etc. They told me to try different bottles and teats I have a cupboard full of different bottles. My health visitor kept coming to see me as she thought I was suffering from PND as well as the fact my DD was seriously ill at three weeks. When I would describe how her colic was horrendous and would go on for 6-7 hrs a night they said it was all normal. In the end I took to putting her in front of Dr's with the bottle and showing them she wouldn't drink. When she kept falling down the centiles she would be hospitalised with an ng tube until she would drink again for periods of up to two weeks at a time.
Her last stay was in December where it was decided that she would be sent home with an ng tube to avoid any more hospital stays. I remember quite strongly telling the Dr that I thought she needed her milk changed. All he would keep saying was it was reflux because I said she arched her back and prescribed her omeprazole. He took it out of context because she did but this was at the sight of the bottle to get away from it not because of reflux. She would feed when she was asleep like the perfect feeder.
They did in fact discuss with me in December putting her back onto cows milk because of her repeated bottle refusals but I point blank refused and they said they couldn't do it without my consent.
She was five months in January when I persuaded the dietician to trial her on Neocate. Her weight has increased dramatically, the excessive vomiting stopped as did the stomach aches and diorrhea but she just hates it!!! She would scream and scream at the taste. I was just horrified. I mixed it with vanilla essence, nesquick and fruit purees to try and get her to drink it but she would fight me to the bitter end until I would give up and put it down her tube.
I feel a bit abandoned by the speech and language therapists. They felt she wasn't a severe case but what is?
She refuses to even pick up finger foods that she recognised and won't open her mouth when I offer her purees on a spoon most of the time.
I have bought a lot of different foods that she won't recognise today and we are going to play with them and if any goes in her mouth it will be a bonus.
Thanks for your post. I do feel that there is poor diagnosis and information out there about cmpi and that others may be going through a similar bad time in getting a diagnosis.
In terms of the g tube I am going to wait until I go back to work in Aug before deciding. She will be going to nursery two days a week and shelves children. I'm hoping that seeing them eat might encourage her.

I meant loves children!

Melanie, that sounds like progress. Even if she didn't want the avocado, the fact she was happy while food was presented is a good thing.

I used to sit on the floor behind DS so he couldn't see me coming at him with the food (or see any anxiety on my face) , and point with my left hand at a toy or something that interested him then tuck a teensy (1cm) sandwich into his mouth while we continued to focus on the toys.

If she prefers savoury, could you try a tiny wholemeal bread sandwich with margarine and smooth meat pate on, as they are high calorie? Or humous or tarama - which is about as high calorie as it's possible to get, and very savoury in taste. Could be worth experimenting with.

My memory is that DS was OK with foods that are dry but dissolve in the mouth, like those baby rice cakes and Organix Noughts and crosses. Maybe worth a try if she has a similar fear of textures that involve swallowing.

Does she get sick a lot these days?

The first time I ever saw him voluntarily put food in his mouth he was three years old. It was at a big outdoor picnic in a play park. I'd gone to help his brother on the slide, turned round to check on him and he'd crawled over the tablecloth to stuff some cheesy Wotsits in his mouth. I had to fight back tears as I was with a big crowd of mums I didn't know. It may be a long, slow journey to normality so de-stress about it as soon as you can. The calmer you are, the easier it becomes. All that matters is that she stays alive and doesn't drop the centiles any further.

My lowest moment was when DS was weighed and the HV put a biro dot on the margin of the page below the centile chart as he was below 0.4, the lowest centile, and so, was off the scale. I used to stare at that and cry. But the best thing we ever did was to calm down about it, ignore all normal weaning advice and just trial anything and everything to keep him alive.

Melanie that is a horrific story. No wonder you feel anxious about her eating.

I hope the food play goes well today. I imagine you're going to have to fight a big internal battle to stop yourself trying to get any of it in her mouth. The emotions you're experiencing must be overwhelming. I really feel for you.

Have you talked to anybody about just taking the pressure off altogether for a little while, feeding her just through her tube and not trying to get anything in her mouth? I wonder if that, alongside being able to explore food without knowing it is food, might help reduce her fear response.

I wouldn't suggest that you did this without advice from someone like a dietician because I don't know if this could lead to her relying more on the NG tube. I'm just thinking about the approach I would take with a child of this age if this were about something other than food, e.g. fear of bathing.

She did actually have two weeks off from food completely recently. I only started it again on Monday and saw how bad she was which prompted me to join mums net and to see if I could get any advice.
We were advised to try and wean her as early as possible because of her bottle refusal so started at 16 weeks.
Until she was ill a few weeks ago she would always be given a baby biscuit, rice cake, breadsticks or baby crisps during every tube feed. This went well for a period but just prior to her being ill she started to refuse them altogether and wouldn't even hold them. If I put them in her hand she would throw them on the floor instantly. If I sat behind her and put them to her mouth she would instantly grab my arm and take it away or take the food out of my hand and drop it. She would turn her head away and in some cases would almost say the word 'no'. I was hoping the break would have done us both some good and although I feel better having had a couple of weeks off she's still not having any finger food.
I tried her with rice cakes and crisps today with no success as I did porridge. She just gets upset and starts sucking desperately on her muslin cloth which is what she does when she feels stressed so I feel I have no choice but to lay off the finger food for awhile.
I like the idea of tiny bits of bread smeared with hummus while I sit behind her so will try that so she can't seen my face or the food coming.
When you say you did this to avoid your DS seeing how anxious you were I can completely understand that. It's very difficult not to betray your emotions and I think I have been through so many, fear, anxiousness, helplessness, desperation even at times annoyance and frustration which I did try and suppress but am sure she has picked up on my emotions sometimes.
We did also sit her in her high chair before she went in it with food watching television with her toys but once we started using it for food at the table with us she was having none of it.
I understand exactly how you felt when the HV put that dot below the bottom centile. It made me cry sometimes. I would feel just awful when she had fallen another one. she went from the 75th- 9th and only didn't fall more because of her tube and the hospital interventions where she was weighed everyday and not allowed to leave until she had gained weight.
In answer to your other question no she's not sick very much anymore perhaps twice a week but manageable amounts. On the hydrolysed milk it was averaging four times a day but it would be the whole bottle and she would be wretching until there would be nothing left in her stomach. This greatly improved when she was put into Neocate.
We did the food play. She absolutely loved playing and waving around the spaghetti. Wasn't so keen on exploring anything else on her mat so I think next time we will just play with one food per session.
I have spoken to DH today and we are seriously considering contacting an independent speech and language therapist and going private as I just don't feel that we're getting the treatment she needs from specialists at the moment.
I can imagine you must have felt elated when you saw your son put those crisps in his mouth. It made my eyes well up thinking about it. It's only because of your hard work and determination that he's the healthy happy son you have today.

We were advised to wean early too because prems lack the mineral reserves term babies build up. Dd was regularly anaemic due to all the blood tests she needed - the irony - and had a re admission for an acute zinc deficiency that was so much more scary than even her first days of life on a ventilator. In the end her reflux and hair trigger gag reflex were so awful she'd literally choke on fresh air so spent pretty much her first year under the rain hood whenever we went out with the buggy, and her paed told us not to give her any finger food til she was one! So I puréed the lot, including roast chickens and ham joints. Weaning definitely exacerbated her reflux for a good four months (sorry), and I had to go so slowly, keeping a food diary testing each food for 3-5 days for its impact on sleep and behaviour and rating them 1-3. The best foods we added to her meagre menus, the worst we left well alone for six months. Once we worked out her triggers she ate much better and we'd let her play with some of her big brothers toys at particularly awful mealtimes - she luffed his ELC helicopter and cop land rover because they have buttons that trigger more lights and sounds than some discos I've been to. I think we ate meals to the sound of sirens for six months? At her worst she reacted to all orange veg, any fruit more acidic than an apple, baby rice, oats, all pulses, the nightshade family as well as milk and soya. At three she's still dairy and soya free, and squirrelly if she eats potato before bedtime, but she eats well, is a wee chunk and while she's fussier than her brother really loves mealtimes now. You'll get there OP. X

Melanie I get a lump in my throat reading your posts. You have the same determination. Your daughter is so lucky to have you.

One thing we didn't realise is that being sick that often scars the throat. the acid from the stomach is really vicious stuff, it would burn our flesh, and when it repeatedly reaches the throat is burns the skin there too, so she may have a lot of tenderness and scar tissue which makes swallowing very uncomfortable. That's one reason I wondered if she'd tolerate icy things.

The spaghetti play sounds like a great success. It'll take time. Sounds like she can pick up on you being more relaxed too.

I wish I could show you photos of DS. He was a bald skeleton for three years. And now he's tall with really thick hair and built like a rugby player.

Are you eating in front of her? I forgot to do that for ages. I remember him looking really confused and surprised when I went over the top about an ice cream. he didn't want to try it but he was intrigued that someone could be enjoying it so much. (Even though I wasn't really - I ended up with a food aversion alongside him, it was so stressful at the time.) Pretending to love the ice cream felt ridiculous but it worked. I could see him thinking 'Really? I didn't know it could be fun.'
Also, you could try letting her see you offering food to DH to taste and him offering you a taste of food from his fork or his plate. Just let her see the two of you being playful with and curious about food and sharing it, and feeding each other, so that when you try and feed her, she knows it's something everyone does.

It sounds like you both have been to hell and back reading your stories! It's comforting to know that there will be an end at some point. The main thing is that she's happy and healthy.
I never knew she may have scars from all the vomiting. I guess the only way I'd be able to get it to her is by sitting behind her and rubbing it on her lips so she can lick it if she's unwilling to open her mouth.
In answer your question I have been guilty of having a poor association with food since she's been born but in a bad way. Rather than not eat I have over eaten for comfort and have actually put on a lot of weight. Im sure she must have picked up on my emotions watching me upset eating or when sitting at the table with her. She's also sat up at the table for months with me in her bumbo watching me eat. I think at the time I felt so anxious I was just desperate for her to pick anything up as she would just sit there looking at it. We stopped at 7 months because she would cry as soon as we sat her at the table so she now sits away from us at mealtimes and is quite happy with that. Whenever I try and feed her it's done on her mat now.
I have actually relaxed a lot more in the last month and am hoping that she picks up on that.
She's not interested in watching me or DH eat at all. However, she is very close to her grandparents and she takes a keen interest everytime she eats anything although she's not brave enough to try any but she is always offered some.
She will be with her grandparents three days a week when I go back to work in August so they might be a positive influence.

(((hugs))) again. I think it's bound to trigger an unhealthy reaction to food in us too. I couldn't eat much for a couple of years but have more than made up for it since .

It's good that she'll be with grandparents. I think they can pick up on our anxiety but when they are around people eating without anxiety, they do better. DS went to daycare for 2 days a week from 11 months and though he never ate much there, he ate more than he did at home.

You poor things, it is tremendously difficult when they develop oral aversion.

I completely understand your feelings, DS2 had an NG placed at 5 weeks then a gtube put in which we removed when he was 3. He's now 5 and although still fussy is a healthy, happy thriving boy!

Firstly, I know its hard but really push for feeding therapy with SALT and OT - we used to go to a weekly group and get given loads of tips on helping to explore food in non-pressued environment. Has he had a fluoroscopy with SALT? DS2s showed an irregular and weak swallow so we got lots of exercises to help with that too, things like using an electric toothbrush on the inside of cheeks, sounds weird but does work! But if you can go private I really would, the longer the aversion goes on the longer it takes to get over it.

One of the best things we did was loads of messy play with food in a play based setting (so not in highchair or at table), cooked pasta, beans, roasted veg, potato and carrot painting etc. Then when it was around in a food setting it wasn't something too unfamiliar or scary!

With regards the gtube we really resisted it for a while but in hindsight it was a brilliant turning point for DS2. Once the NG tube was taken away he seemed so much more comfortable and happy, we could let him get as messy as he wanted without worrying, none of the awful struggle to reinsert when he frequently pulled it out, the horrid tape all over his face......... Within a week of getting the gtube he drank milk for the first time from a bottle!

Be warned though its a slow process, 3 steps forward 2 steps back. DS2 was always set back by colds, teething and it was a gradual catch up, nowhere near as quick as his brother had been. Its also taken a long time for DS2 to feel comfortable eating in restaurants, at parties and other peoples houses, for a long time he'd only eat at home in a safe, familiar environment. He still has stages where he doesn't eat much and I have to try very hard to not nag or pressure him to 'just 2 more bites' as it just makes it worse.

And a big hug for you (not the done thing on here I know but oh well!), it is so so hard going through this. You will need so much patience and resilience but the feeling when they sit and actually a meal is unbelievable!! In fact I think I posted on here when DS2 ate a poached egg on toast and a yoghurt, I could;t get hold of DH and wanted to tell anyone and everyone!! I also cried with happiness the first time he ate pizza, not exactly what I thought would be a mothers proudest moment but was for me!

I've been awful with food since she's been born. I've had some days where I've almost binge ate. I'm not even hungry but I can't seem to stop .
Yes I think being with her grandparents will help and will take the pressure off me and DH a little. They're quite patient and she absolutely loves them.
I feel very disappointed with SALT in my area. We were first came into contact with them when DD was in hospital in December. She was in for two weeks and they came several times and observed her drinking a bottle awake and asleep. At the time they said her swallow was fine as although she refused the bottle while awake, she would suck perfectly when asleep.
They came again in March for a couple of hours to our house. They observed her playing with her toys, sitting on her mat and whilst at the table. They asked me to do what I would normally do with her and they observed her being happy to hold the food while I gave it to her but would put nothing in her mouth. They didn't mention a fluroscopy but when they saw her they did tell me her swallow is absolutely fine.
They gave me some tips and to try melt in the mouth finger foods although most of the ones on the list contained cows milk but we tried the ones that didn't. They also suggested doing massage around the face but because of her tube she absolutely hates having fer face being touched so that hasn't been great. They then discharged us.
I rang the health visitor upset a month later as still DD refused to eat anything I gave her. She called SALT who called me and said I had to be discharged because she wasn't a severe case- she has the ability to swallow but chooses but to. They said that severe cases are those who are sick at the sight of an advert on the television or getting to the age of 5 and not eating but she could potentially do that I feel if she doesn't have help. When we saw her paediatrician last week he seemed slightly baffled as to why she had been discharged and re-referred her but it took three months to come through last time so we are probably at the bottom of the queue again.
In terms of the g tube. Part of my fear and I know it's silly but I can't bear to let her go to the operating theatre. I'm terrified she won't wake up although Iogic tells me she will be fine. When she was three weeks and seriously ill she stopped breathing and was put into a medical coma in intensive care. (A separate issue I know and I understand that this is extremely unlikely to happen but I feel I can't bear it)
In terms of practicality I can see the benefits- she absolutely hates me touching her face and when she has a cold this is difficult.
She gets very upset when she has her tube change which probably reinforces negativity around her face.
I hate people looking at her all the time everywhere I go. In some baby classes I have quite often experienced people not wanting to talk to us I wonder if they think she is seriously ill and when I tell them she doesn't eat or drink anything they are slightly baffled. Other children notice too and I wonder if this will set her back if she was still to have one when she is say 2 or 3.
If she were to have a g tube how would i feed her while out? At the moment I just pull the my tube out of her clothing and syringe it in and it's pretty easy.
Think it's something we may have to consider though.
You must have been elated to see your DS eat of his own accord I just can't wait for that day.
Sorry for the essay!

Haven't been through exactly the same and didn't get to the stage of tube feeding, but DS2 had an oral aversion. I completely understand how stressful it is. Worst period of my life. He was ok- ish at breastfeeding, a big hungry baby, but had very bad reflex. A v painful ear infection and burst ear drums at 5 months when I was trying to wean him made him absolutely refuse food. He had previously gone on several nursing strikes for days too, so had form! He was born on the 98th centile at 9 lbs 13 and slipped to the 9th centile and went lower. He wouldn't put anything solid into his mouth and continued only to breastfeed - sometimes - which meant I was doing nothing but feeding or trying to feed day and night. Dietician kept hating on about fingers foods, but he never picked up and chewed anything himself. HV suggested totally refusing to breastfeed him and giving him solids to "force" him - he didn't eat or drink for 24 hours before I cracked and breastfed. I got him to swallow his first mouthful at 10.5 months.

I second what previous posters have said about slipping food into their mouthswhile playing. No sitting in the high chair or doing mealtimes. Calories are everything. I'd also say forget healthy eating and give whatever your DD likes. It was salty umami stuff that did it for DS. Toast dripping in hot butter with marmite, for calories, finally, that he sucked at. Sweet stuff didn't cut it. Peanut butter, if no nut allergy. Cream cheese mixed with a little marmite too.

The good news is that he started eating and was more or less eating normally at 19m. He's still little for his age and more babyish than his peers or older brother was at that age. But he's eating pretty normally at 2.2

Gosh I can understand why he refused! Poor thing in that much pain!
Well I completely understand about the finger foods. She would just sit and look at them. I would have to put them in her hand but she would never put them in her mouth.
She did for awhile suck on biscuits etc when I was tube feeding her but she's refusing that now.
I have also done that but have always given in after around 14 hrs. Before she was given a tube she would completely refuse the bottle for days and I would have to get by Dream feeding her a couple of ounces to get her by. She just never ever gets hungry! She just gets to the point where she goes to sleep and when awake her eyes look sunken. I would take her to the gp after 24 hrs who would admit her to hospital and she would be given a tube until she would drink.
I think just getting the calories in seems to be the way forward. Would never have thought of marmite!
I'm glad to hear your DD is now eating normally x
Thank you for all your posts everyone. I feel so much better knowing that others have had similar experiences to me .

• sorry meant DS