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Exclusively breast fed 15 month old food refuser - any ideas?

26 replies

FoodSchmood · 10/07/2013 13:58

I?m posting in the hope that someone might have had a similar experience with their child and may be able to offer some new ideas or things to try that we haven?t already thought of. I?ve namechanged as this is a pretty unusual situation and rather identifies me and my son, so if you know me and recognise me, please don?t mention my usual posting name/our real names please.

I?ll try and keep this short, but suspect it?ll be rather epic...

My son is 15 months old and exclusively breast fed.

We started weaning at 6 months, as per the guidelines, taking a baby led approach. At first he tried some foods, but within a few days of starting to give him food he was pushing it away. This quite quickly became a real aversion; he would use one finger to push food off his highchair tray, if put back he became distressed. Sometimes just the sight of food near him would upset him. We stopped trying for a few weeks then tried again, with the same response. This carried on for months. At some point we tried spoon feeding him, he refused to take food from a spoon, my finger, anything. If any did come into contact with his mouth/lips he would gag, retch and if it still was on his tongue/in his mouth he?d vomit the entire contents of his stomach up.

We had no way of getting medicine into him, we would pin him down and struggle to syringe or spoon in nurofen or calpol occasionally, if he had a very high fever or was clearly in bad teething pain for example, but more often than not this would just cause him to retch and vomit. I don?t know that we ever got more than a tiny amount actually down into his stomach.

He has never taken a bottle. We had some limited success getting water into him from a sippy cup and from our sports bottles, most would be dribbled out but he at least let us put it to his mouth and help him pour small amounts of water in, we think some was swallowed, but can?t be sure. We tried putting some expressed milk in the sippy cup once, he gagged on it and promptly threw up. He then refused to touch the sippy cup again (for months).

He was a big baby (over 10lbs at birth) and remained on the 91st-98th centile until he was 11 months old. He started walking at 11 months and his weigh has dropped every month since. He now weighs less than he did at 9 months old and has fallen to the 50th centile. He has also gone right down the height centile as well; from the 75th to the 25th (at last measurement, I think he may have fallen further ? it?s been a few months since we checked).

He is a terrible sleeper; we co-sleep as he still feeds on and off all night and with him dropping weight we can?t afford to lose those feeds so aren?t making any real attempt to get him sleeping through just yet. He does his lunchtime nap in his cot (by our bed), which varies in length from half an hour to two hours and we are working on getting him doing more of the night in there, starting every night with him sleeping in there during the evening and moving him into our bed the first time he wakes after I go to bed. Though some evenings he is so restless and wakes so frequently that I move him to our bed sooner, as he sleeps better in there, even without me there.

He had a posterior tongue tie and a grade four lip tie which were lasered about a month ago. This made an enormous difference; his feeds were better and quicker and he no longer suffers with the appalling wind that he did for the first year of his life (and my nipples no longer sport permanent scars from his teeth catching badly). He now sleeps much more calmly than he used to (previously he would thrash about, rolling constantly from side to side, bringing his knees up to his chest and kicking lots) and wakes up less frequently, though still every 2-4 hours all night long. He now also takes water reliably from our sports bottle, deliberately sucking some down and swallowing. We can also get medicine into him (though that is still a battle, as he hates have things put in his mouth, but he does swallow it down once in his mouth).

He has suffered from silent reflux which over time we have been treating with changes to my diet (as it?s been impossible to get medicine into him to treat it). I have now excluded all dairy products, eggs, soya and beef from my diet which has made a huge difference. I suspect there is still something affecting him though as he still sometimes has nights with suddenly bad reflux and very smelly wind/poos. He also sometimes gets a very red bottom which seems to go hand in hand with me eating foods which he doesn?t tolerate well. I?ve not yet been able to identify what food it is though.

Since the tongue tie was removed we have been managing to get a daily dose of omeprazole into him which we think is helping, but it?s only been a week or so that we?ve been consistently able to get anything like the full dose in him, so it?s too early to be really sure.

The big change since the tongue / lip ties were removed is that he will now touch food, hold it and often put it to his lips. He has tasted one item of food every day for a week now, which has never happened before. He has bitten off, chewed and swallowed a very small amount of bread a couple of times now, but we are really only talking one or two pieces, so not really enough to count calorie wise. He is still very averse to being spoon fed.

We have both suffered with thrush recently, and he has just developed what we think is ringworm in a spot on his cheek. We have cream for that, but i?m a bit worried that he?s getting fungal infections like this all of a sudden. Worried that he?s getting run down and not the strapping big healthy boy he used to be.

Other info, don?t know if it?s relevant, but I have crohn?s disease and my partner had pyloric stenosis as a baby, a laparascopic fundoplication as an adult due to severe reflux and there is a family history of reflux on his side of the family. My son has had blood tests done to confirm that he isn?t deficient in any minerals or vitamins and I am taking a breastfeeding supplement to try and ensure that my milk continues to provide what he needs (without leaving me too short either!)

I?ve probably left loads out, but I think that?s the key info.

None of the specialists we have seen have ever met someone like our son (we see a SALT, dietitian and a gastro and are waiting for a referral to the allergy clinic). They?ve met kids with iron deficiency anaemia that makes their mouth sore so they won?t feed at all, and kids who will only take a bottle because of tongue ties, but not the other way around, they?ve met older children with food aversions, for various reasons, though autism spectrum disorders seem to be the most common cause of this sort of thing. They?ve heard of vitamin B deficiency causing food refusal, tut they have never met or heard of a child that breastfeeds but won?t take a bottle or solids at all, at this, or any age.

We are making progress towards getting him eating, but with his weight dropping so much we can?t afford to let this continue much longer. We have put off him having an endoscopy and PH study (the only tests the gastro could think of to do) as we wanted to avoid the anaesthetic/hospital stay and the gastro we saw didn?t expect to find anything and couldn?t name a single condition that could cause these problems. But we shall have to submit to the tests soon if only to rule out physical issues before going further with therapy. The dietitian wants us to refuse feeds to our son so he will be hungrier and take a bottle/eat, but I don?t think he understands that the bottle/food is the same thing as what he gets from breastfeeding; he?s gone 8 hours without feeding before and still wouldn?t take a bottle. I hate the idea of starving him like that (not least as he is losing weight and clearly needs all the milk I can get into him) but will try it again if I have to. We suspect that there is going to be talk of feeding tubes soon, which we are desperate to avoid. The SALT wants us to follow the "steps to feeding" and keep it all very low pressure and all about positive food experiences, which is fine but rather hard to balance against the need to get medicine in him and is contradictory to the approach of the dietitian...

My personal feeling is that now his tongue and lip ties are removed there is nothing physically stopping him swallowing properly anymore, but that psychological issues have built up around food that we need to work through. I also think the silent reflux may have made his throat sore, which hopefully is resolving now my diet is better and he is medicated...

So I guess what i?m asking is, has anyone else experienced this? If so, what happened with your child? Did they just spontaneously start eating? Did you do desensitisation therapy with a SALT, did it work? Is there anything you can suggest we try or are there medical conditions we haven?t thought of that could be affecting him?

hmmm. that was ridiculously long... sorry!

TLDR: Formerly tongue tied 15 month old still exclusively breastfed and very food averse - any ideas?

Thanks in advance! I'm going to be online on and off this afternoon, and with any luck online this evening (assuming somebody sleeps better this evening than yesterday...) so apologies for any delay in responding to comments/questions.

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scaryg · 10/07/2013 14:15

Just a brief reply as I'm on my phone. But wanted to say you're not alone and by the sounds of it you're doing well in the circumstances.

We're having issues with DD who is 18 months and still ebf, lots of health issues and not doing very well with solids at all.

I'll be back this evening when she's in bed.

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WLmum · 10/07/2013 14:18

Sorry no experience but just wanted to say well done for keeping going! It sounds incredibly tough.
My gut instinct would be to carry on as you are with the low pressure approach - you are making some progress even if only tiny steps.
Do you think he would tolerate one of those tiny supplementary feeding tubes alongside your nipple? You could then give him some high calorie formula alongside bm.
Hope you get some food advice/help soon.

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FoodSchmood · 10/07/2013 14:20

Oh my god - a response!!! I honestly didn't think I'd get even one!! Thank you! Sorry to hear you're having similar problems - wow at 18 months and still ebf - that must be exhausting! I thought 15 months was hard! Looking forward to hearing about your DD tonight - thank you so much for replying!

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FoodSchmood · 10/07/2013 14:22

WLmum thank you for replying! I don't know if he'd feed if there was an additional tube there alongside my nipple - I know he won't feed if there's any trace of cream (for thrush etc) on my nipple, but it's worth considering. I didn't know you could get tiny tubes/do that so will ask about it at our next hospital appointment. Thanks for the suggestion!

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stargirl1701 · 10/07/2013 14:40

It's called a Supplemental Nursing System. I used a Medela one (under different circumstances). I got my from Amazon. I guess a high calorie formula could be used.

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Davinaaddict · 10/07/2013 15:27

Small steps are always good - things are moving in the right direction Smile.

I've never heard of the small feeding tubes either, but that sounds like a good way of getting some extra calories in him, until he catches up.

It would be great if some feeding experts could come along with some advice, but in the meantime, keep the faith - he'll get there Smile

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ghosteditor · 10/07/2013 17:53

Sounds like things are moving in the right direction and I think it's amazing that you've come so far.

I hope someone with relevant experience will come along soon. Have you tried ice cubes, just to play with? They won't smell but might help him get used to different textures. I also wonder if lots of sensory play with dry rice, lentils, jelly, play dough etc might help - can all be done in his high chair so is a similar context to food but without the pressure to eat, and might get him used to different smells and textures?

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MoreSnowPlease · 10/07/2013 20:55

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scaryg · 10/07/2013 22:31

Sorry I've not had a great evening, DD is still getting over gastroenteritis and just hasn't settled long enough for me to get to the pc. But I will be back tomorrow.

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FoodSchmood · 10/07/2013 22:55

stargirl1701 thank you - that's really useful. We have a prescription for some non dairy/soya formula but I don't believe it's high calorie or anything like that. But will check with the dietitian and see what they say. I'd been so focused on getting him eating/drinking that it hadn't occured to me that it might be possible to supplement the breastfeeding in some way. It could buy us the time we need to get him eating at his own pace, which would be amazing.

davinaaddict thanks Smile

ghosteditor I haven't tried ice cubes - will give them a whirl. We tried giving him a frozen muslin once and it didn't go down well, but that was pre-lasering, so you never know! We've been doing sensory play with actual food, but it hadn't occured to me to try non food stuff - thanks for the suggestion. I wonder if I can find an edible play dough recipe?

moresnowplease We've been on kellymom and various other sites over the past 9 months, but none have anything targeted for food refusers this young sadly. Will be googling the supplemental feeding tube/possibilities lots though!

We eat in front of DS several times a day (hell, i'm bfing a 15 month old, I eat more than Geoff Capes does when he's in training!!) and give him any food he reaches for. He is fascinated by food; reaches for it, will now touch it, feeds us any food he is given, tries to put his fingers in our mouths when we are chewing/eating but doesn't really put it in his mouth a whole lot (though as I say, that is slowly improving). Our once light grey carpet is now stained multicoloured from him wandering around with all sorts of food... It's amazing how much of his body he can cover in food without actually getting any in his mouth! Wink

The paediatric dentist we saw for the lasering said that DS had an asymmetrical posterior tie (which is apparently unusual) so we think that perhaps when he tried to swallow food/water/milk from a cup or bottle instead of neatly moving it down into his throat, his wonky tie made it hit the back/side of his throat instead, making him gag and retch and this is where his fear/aversion to food has mostly come from. Whereas with BFing it's squirted down into his throat, so it's just the swallow reflex moving it down, so the wonkyness is less of an issue.

Though it's fair to say he's a sensitive kid, doesn't like chaotic noisy environments, bright light, is shy, likes to meet new people at his own pace, is very clingy to me, even with his Dad etc so it's possible that food/taste is overwhelming for him.

We'll keep an eye on the posterior tie growing back, as it was lasered rather than cut we are hopeful that it won't (it's apparently less likely due to the cauterising nature of the laser, I believe). We did the exercises for 10 days post surgery as advised so fingers crossed! The lip tie is looking good, I think his front teeth may have already moved closer together, which is incredible... (must get photos out and compare!)

We keep our upset at his not eating hidden away from him as much as possible. I'd be lying if I said I didn't get frustrated/upset sometimes but I rarely let him see that. We keep food fun and varied and make an effort to eat in front of him, to model good eating behaviour as much as possible. That being said, he does get freaked out by the highchair/eating at a table sometimes - he knows it means food and we've actually had the most success getting him to eat either while playing in the living room or in his buggy while on the bus/out and about. Keeping it low pressure works well for him so we're doing that as much as possible. Fortunately we get the bus every day, so lots of opportunity for non pressured eating! You should see the size of the snack bag I keep in the buggy!!

I asked the gastro about whether he could have additional problems further down his throat - what with tongue tie being a midline defect I wondered if any other parts developing around the same time in utero could have been affected - and he said he wasn't aware of anything that is linked to tongue tie or would explain DSs food behaviour. If we end up doing the endoscopy I guess we'll find out for sure. Now we know DS can actually swallow (post lasering) we're less concerned about physical issues as it seems less likely... we hope anyway! (though physical issues have the benefit of potential fixes, whereas psychological... that's rather harder to "fix" really...)

We haven't spoken to the milk matters folks about DS - but it was their TT symtpoms list that made me finally realise DS had a tongue tie (we only realised when he was 8 ish months old - it really should have been picked up sooner but the hospital I had him in is shit and our HV is a dippy mare who said "it didn't sound like tongue tie as he'd put on weight too well and would be underweight and ill by now if he had one"..... grr!) Do they do advise/info on a personalised basis then? I hadn't realised..

Thanks all for taking the time to reply. I'll be off to bed shortly - DS took nearly 2 hours to go to sleep this evening (and is restless as hell) and DP is out til late, so i'm planning on crashing pretty soon! I'll be back tomorrow when DS has his lunchtime nap (hopefully anyway!)

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FoodSchmood · 10/07/2013 22:57

scaryg your poor DD - I hope she feels better soon. No worries about not posting tonight, I completely understand. Whenever you get a chance I'd love to hear about your DD but there's no hurry - I'm not going anywhere! Wink

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FoodSchmood · 10/07/2013 22:59

moresnowplease sorry - I meant to ask - did you get your DSs tie cut in the end or just plough on with it there and hope it stretched/stopped being a problem? How old is your DS now? How great that he was so determined with food - though it must be hard seeing him gag and choke Sad

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nancerama · 10/07/2013 23:06

Wow! You've really been through the mill. DS refused almost all solids until he was about 14 months old, but suddenly "got it". He has just turned 2 and eats a good range of foods now (but is suspicious of new things).

The thing that worked for us was a fork! He refused to be spoon fed by us and didn't much like picking things up, but loved spearing things with a fork.

Have you read "My Child Won't Eat"? That really helped me relax and when I stopped caring, DS started eating.

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aGnotherGnu · 10/07/2013 23:08

Hi FoodSchmood. I don't have any advice, but am watching as I know someone who is having a similar issue with an almost 1 year old.
Regarding the TT, was the lasering done under GA? I hadn't heard of it being done by a dentist either, only by ENT under GA with older babies, so would be interested to know more

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ghosteditor · 11/07/2013 07:49

My DD has the same lip tie procedure with the same dental surgeon. It's not done under general; they use a different laser to numb the area first. They swaddle the children in order to do it.

My DD is 18 mo and had her ULT procedure two months ago. She has a mild posterior TT which we've left. She hardly ate anything before in terms of solid food but she's doing very well and regularly eats most her meal - unheard of before the procedure.

Unfortunately, issues with solid food are not commonly linked to TT/LT and there's no scientific research of which I'm aware.

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MoreSnowPlease · 11/07/2013 12:11

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MoreSnowPlease · 11/07/2013 12:14

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nextphase · 11/07/2013 12:31

lots of edible playdoh recipies here. Some work better than others!

I'd say your doing a fab job, and the fact that he is now starting to put food to his mouth is amazing progress.

Is he actually loosing weight, or just dropping centiles? If loosing weight, the feeding tube sounds like a fab idea - think they are normally used for prem babies, but don't see why it won't work. The Dr should eb able to prescrible some very high calorie formula to try and counteract the weight loss.

Hope he continues to make progress. FWIW, I know a 4 year old who exists on bm, peanut buter sarnies, pears and chips/crisps.

Would he take vitimin drops directly??

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GinMonkey · 11/07/2013 19:28

I don't post much but my heart went out to you reading your post. My DD is 15 months and has always been a poor eater - in this warm weather she seems to be surviving on milk and air! I just wanted to say that we had a consultation with milk matters when she was about 3 months and it was very helpful - drove there for a face to face meeting and a thick posterior tie was diagnosed. For various reasons we decided not to have it cut and she sort of got better at BFing by herself. She also has a lip tie but seems to manage most foods ok though can be quite fussy and at the moment has a shockingly small repertoire of food she likes!

Bit of a ramble way to say that you're not alone having a DC with eating issues and while DDs problems aren't quite on the same scale as your DS she is slowly getting there. You sound like you're doing a brilliant job - he will get the hang of it eventually!

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SpeckyB · 11/07/2013 23:38

My 9 month old DD won't eat food, take a bottle or allow us to give her calpol etc. the only foods she'll try are those that melt in the mouth. I wondered if you've tried offering your soon Ella's Puffits / Organix Carrot Puffs / Popcorn? I started off by softening the Ella's Puffits in my mouth and now she will eat them straight from the packet.

Unfortunately most things that melt in the mouth aren't particularly healthy, but it's a start...

Well done and good luck!

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FoodSchmood · 13/07/2013 14:58

Hi all, sorry for disappearing. DS came down with a D&V bug (his first ever!) in the early hours of Thursday and I've been rather tied up looking after him ever since.

nancerama How funny that it was a fork that made the difference! We have a little safe plastic fork that DS likes spearing things with, but so far none has made it into his mouth from the fork. But we shall keep offering it! :) I've bought the book you recommended and with any luck will get a chance to read it this week (DP has a weeks holiday - hurrah!)

aGnotherGnu as ghost says, it's done with a laser with the child swaddled. We initially saw Dr Mervyn Griffiths at Southampton to get DSs tie diagnosed when he was about 10 months old and he said that in babies that don't yet have teeth he's happy to try and cut the tie with the child swaddled, but once they have teeth he won't do it, as if the cut bleeds he can't be sure of getting into the mouth to apply pressure and stop the bleeding. Hence the need for general anaesthetic in older children. We weren't happy with DS having the anaesthetic when they didn't think it would make any difference to his eating, only the breastfeeding and at that point DS wasn't losing weight so we were happy to leave it and just persevere with the difficult BFing.

We were facing DS having a general anyway for the endoscopy the gastro wanted to do and they were being awkward at he hospital about cutting the tie at the same tie. They also wanted to do a barium swallow on DS and were proposing putting a tube in his mouth (with him conscious) and pumping the barium in as he wouldn't swallow. We thought this was horrific and wanted to avoid it at any cost. Having heard about the lasering through friends we decided we had nothing to lose by going to see the dentist that offers it and seeing what he said.

So, with the lasering, it cauterises as it cuts so the risk of bleeding is tiny, hence them being able to do it just using swaddling. We went and saw Dr Malcom Levenkind (www.drlevinkind.com/) in his practise in East Finchley (north london) but he also has a Harley Street practise. He doesn't allow parents in the room while the lasering is being done, so you have to hand your child over to a nurse who takes them through to the surgery room (which I really hated). But the nurse spent some time playing with DS first, and held him for a few minutes before leaving to try and make it less scary. Our DS is super clingy to me so he screamed and screamed, which was really hard for everyone. He also put up a hell of a fight with the swaddling but they managed it (no one has ever managed to successfully swaddle our DS before - the midwives in hospital tried when he was born and he just wiggled free every time). Our DS is super wary of anyone putting anything in his mouth so they started by doing his lip tie and once that was done, while he was still upset, he let them go into his mouth and do the tongue tie - which is amazing to us as he'd rarely even let me put my finger in his mouth. They really are very good with children! They use a cold laser to manage pain which seemed to definitely have an effect (I was sceptical as I couldn't find much in the way of scientific evidence for it actually relieving pain) as DS didn't seem to really be in pain until several hours later. At which point we gave him calpol; having never been able to get medicine into him due to the gagging/retching we then, barely 12 hours post procedure were able to get him to swallow calpol without gagging or retching. For us, this was nothing short of a miracle.

While there doesn't seem to be much in the way of scientific research/knowledge around posterior tongue ties and food refusal (the consultants/SALT at the hospital hadn't heard of it), if you google you'll find stories from other parents who have had issues and on this tongue tie site they list food issues as a side effect of tongue tie, so it's definitely something people are aware of anecdotally.

milknosugar how strange that cutting the tie didn't help straight away with the BFing, perhaps they didn't get it all or perhaps the lip tie was the bigger issue for your DS? With our DS it was an immediate improvement. He fed in the waiting room post procedure and it was like feeding a different child. His latch was much deeper, his teeth no longer caught so badly it hurt / bled, he got the milk out much more efficiently, no more swallowing air down, noisy milk gulping sounds gone, no more slipping down the nipple. It was a revelation!

It sounds like getting the tongue & lip ties looked at again might be a good idea for you - stuff getting stuck on the roof of his mouth that he can't shift sounds like his tongue is tied again (one of the diagnostics in older kids of a tie is to open your mouth wide and try and touch your tongue to the roof of your mouth - if you can't touch it at all, you may well have a tongue tie!). Dr Levenkind is private, it cost us £90 for the consultation and £290 for the lasering (which was done immediately after the consultation - no having to make a new appointment and go back).

DS never had a particular choking incident - he tried food at first and over about a week just got more and more reluctant until he wasn't willing to interact with it at all. Dr Levenkind said that his posterior tie was asymmetrical, so my theory is that when DS tried to swallow, food was hitting the back of his mouth/throat instead of going down tidily and he became afraid of food because of this. Now his ties are cut he can swallow, but the fear of food remains. That is abating, but not really quickly enough...

nextphase thanks for the link to the recipes! With DP off this week I shall be making some asap for us to all play with!

Sadly he is actually losing weight - he's gone from 10.7kg in March down to 10.4kg last week. I know this doesn't seem like much, but if he'd been tracking his centile he should have gone up to between 11 and 12kg in this time. The hospital said that as long as he was still gaining weight, no matter how little, they weren't too worried, and they were happy to overlook one month of weight loss when he started walking, but it's been 4 months in a row now, and he's dropped down a couple of centiles as well, so it's time to start worrying basically.

ginmonkey thank you :) While I wouldn't wish these sorts of problems on my worst enemy, it is nice to hear from other parents having similar issues - nice to feel less alone! All my friends kids are eating up a storm - we have a friend from ante-natal with a daughter a day younger than my DS and we meet up every week - she eats so well and I keep hoping DS will copy her but so far no joy...

speckyb the SALT suggested the same thing - sadly DS is having none of it. He doesn't like sticky textures, so as soon as the puffs start to dissolve on his wet fingers he drops them and wants them gone and there isn't a chance of him letting me put them in his mouth. I hadn't tried popcorn though, will give that a whirl. I like the carrot puffs though - they're suprisingly nice! I got some of the Ella's raspberry and vanilla puffits and was really disappointed at how bland they were... DS refused to put either in his mouth (though he had fun walking around taking them out of the pack and putting them all over the living room then walking around picking them up and putting them back in the packet...) He will happily squish bite and melt (as the SALT called them) foods on his highchair tray though - so it's progress of a sort!

Sadly the puking bug has put him back rather with food - he's now refusing to put anything in his mouth. But he'd never had a tummy bug before and has never been particularly sicky, so puking was a whole new experience for him. I'm hoping as the bug fades (he's still got really poorly guts) he will be willing to taste stuff again. We've had to miss his omeprazole for 2 days due to the bug (it's awful stuff to swallow and even worse to vomit back and as getting it in him is a massive battle that makes him cry we decided to just leave it for a few days as crying was a trigger for the puking) so that combined with the bug have brought his reflux back too which won't be helping.

Sorry if I've missed anyone/thing - am zonked from a tough few days and night time nappy changes (haven't had to do those in yonks) and it's like thinking through fog atm!

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FoodSchmood · 13/07/2013 15:00

speckyb sorry - forgot to say - that sounds really hard with your daughter. Do you have any idea why she refuses other foods? Does she have a tongue/lip tie at all? With any luck as she approaches 1 she'll naturally start to eat more food - some kids are just slower taking to weaning than others so I shall keep my fingers crossed for you! Smile

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MoreSnowPlease · 13/07/2013 19:06

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FoodSchmood · 16/07/2013 15:38

hopeful bump! Smile

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MoreSnowPlease · 20/07/2013 22:44

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