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

(27 Posts)
FoodSchmood Wed 10-Jul-13 13:58:42

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.

How is your DS getting on now, any improvement?

HollyMadison Sat 20-Jul-13 23:34:33

Hi OP. I wanted to say that your story sounds similar to ours (although we haven't had a tongue tie - that we know of!). DS was EBF and a food refuser, both finger food and spoon. He had silent reflux and also has some other issues (hearing impairment) and I think these issues all combined and resulted in him hating the feeding experience. He didn't ever take a bottle either.

We've been on a journey involving SALT, dieticians, gastro pead and so on. At about 11 months his weight became very concerning so he was put on a high calorie milk. Luckily by this point he was able to drink from a hard spout tommy tippee. I remember to get him into drinking from the cup we used to get him to sit on our lap facing outwards and in front of the tv. That could be worth a try.

He put on weight well with the high calorie milk but, not surprisingly, this did not improve his solids eating much as he was getting all his calories from milk. He did start getting quite a few tummy upsets and we took him off milk at about 20 months during one of these upsets and discovered he was suddenly hungry for food. I'd stopped BFing by this stage.

We have tried sensory play with him as directed by our salt but it hasn't really worked well for us. I think that's because he hates his high chair so doesn't want to sit in it and when it's on the floor or another table he's not interested enough to do it and runs away.

He's now 2.6 and actually now takes in a lot of food and won't drink milk. We have got him to eat by using the iPad, putting food on a fork and pausing the programme until he takes a bite. This doesn't please our salt much as she says he is not learning about food but that's what we are doing to get it into him. Like another poster, we've had success with a fork which he can hold and control (he's still frightened of spoons).

Another thing which has been successful is to give him new food when he's in the pushchair and feeling more relaxed. That's how he started on sandwiches and now he will eat them at meals.

We've always eaten with him but actually he finds this stressful. I guess he's sensed our anxiety although we try to relax.

Anyway, you might find some of the above useful. You might not want to use the tv as a drug like we do but it is something that has helped us to get him eating and relax us regarding his weight and nutrition.

Your LO is still young yet but there is light at the end of the tunnel.

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