The bottle refusal saga continues...week 11

[Inapickle123]

Hi all,

Had some excellent advice from lovely MNers regarding my 5 month old DS's bottle refusal. Sad to say, it's getting worse.

He has gone from grudgingly taking his milk after screaming/collapsing with tiredness, to point blank refusing to take anything during the day. Until last week, he would perhaps take between 18-25 oz during the day (in combination with solids-early weaning on advice of GP) after much screaming. Now, he's refusing his bottle completely-he will take nothing during the day and has even started refusing his night bottle. The only full feed I can get him to take is his dream feed at 10.30.

His refusal is absolute; he will stiffen up, throw his head back and purse his lips. The problem is he is starving but only wants solids at all times. The amount he is eating for his age/stage is ridiculous and he's now getting wise to my trying to add milk to his food and refusing that.

We had a paediatric referral last week and the consultant believes its not the milk, but the actual sensation of drinking as DS has terrible reflux since birth (on adult dosage of losec). As he's putting on weight, there's apparently not much to be done and while he may have an intolerance to dairy, there's no way to test for this.

I can live with him just being on solids. It's not ideal as he can't deal with different consistencies well because of the reflux but needs must. My main problem is that I cannot get any other fluids in him. It doesn't matter what is in it, he refuses to take a bottle so I can't get water in him that way. He refuses to take liquid from a sippy cup and will only take minuscule amounts from a spoon.

How do I get him to drink? I go back to work in 8 weeks and I can't see his nursery spending 45-1h trying to get an oz of liquid into him.

I'm absolutely exhausted. He's still waking in the night but still refuses to eat so, on a good night, he'll wake 2 times and go back to sleep with a dummy. On a bad night-last two nights-he's woken up 4 times for 15m and then was awake from 4-545. I'm just about staying awake-I dread to think how I'll be when I go ack to work full time.

Any suggestions welcome. I've tried new bottles, new teats, colder, warmer, new milk, juice, water-nothing has worked.

Thanks

Not much help but if the consultant think there may be a dairy issue surely trying a dairy free diet is worth trying? If drinking milk makes him feel unwell maybe that's why he won't drink anything? Have you seem a dietician? They might be able to help, good luck

Gosh this sounds a nightmare! I have no real advice and when I read the thread title I was a bit judgey thinking you just wanted him to take a bottle so you wouldn't have to bfeed which is what i wanted with my bottle refusing dd but wow that sounds tough.
So sorry no advice but .

I know you have said you have tried all bottles but have you tried NUK bottles with latex teats?

Syringe?

Hi will he take water from a syringe type thing that you get with medication? My DD will take gripe water and milk from this when she won't have anything to do with a bottle. Also he will be getting some fluids from his solids which should help. Hope someone with more knowledge comes along to help soon.

Gosh this sounds hard. We've had reflux here in various forms and with an early weaner - when I went back to work when DS2 was a year he was only breast fed as medical probs meant he couldn't eat - and he wouldn't take a bottle. He never took a bottle, and would take odd sips form a cup only, but would feed a lot of the night (I ended up cosleeping else I'd never have drunk).

DD has the worst reflux and was weaned at 4 months - and wouldn't take milk at all. She again would only really have water from cups - but at nursery she would do far more than for me at home (as always!). So, as you go back to work and things change he may try for nursery and be ok, esp as having food in stomach may help a bit? Nursery do know about keeping upright etc?

He could get quite a lot of fluids from food, drinsuch as cucumber, oranges, melon etc perhaps?

That sounds very hard. Is a bottle the only way to give milk? I used a syringe for DS at one point, it worked like a dream.

Tried syringe and spoon and all he does is cry and spit it out.

Since 4am yesterday, he's had 12oz-5oz I forced on him at 4am as a night feed (he was still up til 545) 2 oz before collapsing at bedtime and the rest snuck into his food.

He's so miserable and I'm thinking the next step is stopping bottles all together for a week to see if that will help him " reboot" his thinking. Nothing can be worse than the full scale tantrums/tears I experience 5-7 times a day so it's worth a shot.

If it is a dairy intolerance, and he thinks every liquid is going to make him uncomfy, how do I ensure he has enough fat/calories in his diet? He's taking fruit and veg no prob but not fussed on meats (or anything savoury, to be honest) and if I have to cut out yogurt and cheese, I'm not really left with a huge amount.

There isn't a chapter for this situation in any of the parenting "handbooks". I don't think ill ever actually sleep again.

Oh well!!

We had exactly the same thing with my 1 year old. Even after his reflux had settled at around 6 months he still hated the bottle. It did get better with time though, once he had stopped associating drinking with pain I think. Eventually at around 8 months he would happily take his bottle and now has 1 in the morning and one at night as well as drinking water out of a sippy cup at meals and snacks. When it was really bad the only way he would drink was when he was half asleep and lying flat on his back in the cot! I think you just have to go with it and not force him too much as that can cause negative associations in itself. Difficult I know when you are up the wall with worry. So long as he isn't losing weight and still having wet nappies it's not having too much of a detrimental affect.

What type of formula are you giving him?

Its milk hes refusing, not the bottle.

Have you spoken to a dietitian?

It sounds very hard, i really feel for you

Maybe instead of a bottle/teat could you try a straw cup I got mine from asda 2 pound. I found that my dd sat straight up sucking on it. She refused a bottle as she was EBF.

Have a Google for lactose free websites there are ways to find out if dairy allergy it may help, x

Have a Google for lactose free websites there are ways to find out if dairy allergy it may help, x

We had exactly this with DS. It was so stressful.

It was a milk allergy. He had Aptamil Pepti, which is a hydrolysed formula and was sorted within a month or so. Although he was also on lansoprazole for a while (similar to Losec) which also helped. It sounds very very much like this is what the issue is with your son. The trouble is that feeding aversions can be really difficult to unpick, even if the underlying problem is solved. I would therefore suggest being really persistent and getting a trial of hydrolysed formula (NOT lactose free, that won't help).

Your consultant is sort of right that there's no way to test for cow's milk protein intolerance, but the accepted way of establishing CMPI is to cut it out and see if symptoms improve.

Hope things get better soon .

We had this with DS. The paediatrician suggested trying him on Neocate, to see if that helped. And it did! It took about 6 weeks to get him to take it, because it tastes so vile. But then he was like a different baby.

A dairy elimination diet is the only way to test for dairy allergies - read this paper on best practice guidance www.ctajournal.com/content/3/1/23

Scroll down to the heading of 'Non-IGE-mediated CMA'

It's nothing to do with lactose intolerance, it's all about the proteins in the milk. Lactose is a sugar and babies aren't usually intolerant to it.

If you are really desperate, you could always buy the Neocate privately (Lloyds pharmacies can usually order it in and you don't need a prescription) and then present the results to your GP as a fait accompli. But that could be an expensive way of doing it.

But whatever you do, you need to act soon before he develops a phobia of bottles. The neocate is important to replace lipids (and obviously calcium etc) that will be missing in a dairy-free diet.

Good luck!

You poor thing - I had exactly the same with ds1. He had severe reflux and dairy allergy. At the time I couldn't find anyone who had been through similar, even the paediatrician at my local hospital had never seen a baby with a complete phobia of milk and refusal to feed. We only started to get somewhere when we were urgently referred to a paediatric gastroenterologist at a big city hospital. Reading your thread I see a few people have been through similar - it's awful and horribly stressful but you are not alone. Just for the record, my ds1 is now a lively, bright 5.5yo, albeit a fussy eater - although we're making slow progress with that.

I'm also a GP with a special interest in feeding problems in infants - courtesy of personal experience and ds1. There is often an overlap with reflux in babies and cow's milk protein allergy, so although it is not easy to test for either, unless symptoms dramatically improve after just treating one of those, it is usually worth treating for both. Dairy intolerance is usually something most babies grow out of by the age of 1yo, so a dietician referral would be useful and they would then advise you on how and when to try re-introducing dairy products. It's a pain looking for dairy-free foods as so many foods contain milk products or whey, but most supermarkets now have a good free-from range. You can get soya-based yoghurts etc. While baby boys aren't meant to have soya formula milk due to a link with infertility, they don't have to avoid soya altogether so in a yoghurt would be okay.

The difficulty lies in the phobia of feeding because they have learned that eating / drinking will hurt. In hindsight, I wish I hadn't pushed it so hard with ds1's eating as I think I made eating times stressful because I was so desperate for him to eat so we could reduce the awful milk feeds (or attempted feeds). I then created a problem with solids too. Keep going with your dream feed where you are getting some milk in, and keep offering during the day even if he doesn't take much. He'll get fluid from fruit, so if he'll eat that then that will boost his fluid intake a bit. He will probably drink more water as he gets a little bigger - crawling and moving around will make him thirstiest. Ds1 didn't drink much water at first but that improved slowly over time. Sorry I can't offer much more advice right now as my dc's are pestering me! Wanted to answer your thread though. Please feel free to PM me if I can offer any advice or support. x

Today has been a total nightmare.

He was up every hour last night (and from 4-6am) because he was ravenous yet wouldn't eat. Today has been a battle, culminating in a full hour of hysterical screaming at bedtime, all because I had the audacity to try and sneak in the bottle when he was dozy.

Since he was 10 weeks old, I have been completely convinced he has a sensitivity to milk. When he was on anti-reflux milk or regular milk, he would wake himself up screaming because he desperately needed to fart but couldn't manage. This got a bit better when I switched to comfort milk but he still is yet to poo lying down and his stools cause him such pain that he cries (or he did until dr gave is movicol)

Yet no-one-and I mean not a single health professional-will listen to me. I asked for a trial of hypo milk, only to be told it was "just colic". I actually bought se nutrimigen but DS wouldn't touch it-don't blame him at all as it tastes revolting.

I was contemplating switching him to soya milk as I can't take any more of this. I spend up to 6 hours every day trying to placate a hysterical/hungry child and I'm done.

Would the switch to soya (he's a few weeks shy 6 months) be that bad? I know about the links to infertility but, given the small quantity he is likely to take, would it be ok in the short term (prob only another few months til
He is fully weaned). I know there is also a strong possibility that if he does have CMPI then he is likely to be sensitive to soya too, but I'm at the stage where I will try anything.

I don't understand why my GP/consultant wouldn't even try a dairy free alternative. It's not like it would cause harm
And at least it would rule it out. Apparently, he's too alert and not irritable enough/no visible rash, which are symptoms of an intolerance. I did try to show the bright red arse DS has had since birth, but was told that was due to constipation and straining. He's no longer straining yet the redness remains.

The issue now is that DS will take no liquids as he thinks everything is milk. Had my GP actually taken me seriously (rather than looking at my PND diagnosis and decide that I was "looking" for something to he wrong-her exact words) we could have caught this before the aversion took complete hold. Now, I genuinely don't think DS will ever take another bottle without complaint. As he gets stronger/more stubborn, it's just going to get worse. No-one tales us seriously because DS is gaining weight, yet it seems to be overlooked that the only reason he is doing so is because we weaned ridiculously early and dream-feed at night. If we stopped this and just let him starve (as I'm
Certain he would) we would get so much more help. It's beyond frustrating.

He has also now wised up to the fact that I was sneaking milk into his food and will no longer take anything which has been "tainted". His level of commitment for a 5.5 month old is impressive.

I really don't know what else to do. I'm so, so tired of hourly wake ups which I can't solve because DS won't eat. I'm so tired of hearing other people boast about their chilled-out, sedate, sleeping through at 12 weeks, cuddly babies , who are content to watch the world go by. DS spends his life moving (even when sitting still, he's moving), wriggling, screaming, bouncing, fidgeting, fighting sleep, walking (yep-been properly walking with support for the last 3 weeks). He is super cute but it's really not how I pictured things turning out. There are lovely moments but they're constantly overshadowed by the daily shitstorm. I shouldn't be looking forward to going back to work but I am and I feel so incredibly guilty about that.

Oh you poor thing :-( I really feel for you. Five years ago exactly I could have written your last post. We had numerous hospital admissions because ds1 hadn't drunk any milk for 24 hours and was getting dehydrated - despite the trauma with feeding he was a happy little chap provided he couldn't see a bottle of white stuff anywhere and he would smile at the nurses and doctors, consequently convincing everyone that he couldn't be that bad. His weight gain wasn't great but neither was it very poor, simply because I spent 8 hours a day trying to get tiny amounts of milk down him while he screamed blue murder. I felt like you do now, that if I didn't go to such ridiculous lengths to try to feed him then his weight would drop and health professionals would take me seriously. On one admission the consultant requested that the senor nurse try to bottle feed him, to see if it was me, essentially. Thankfully she couldn't get a drop into him either or I think they might have decided I was mad and making it all up.

I don't know where you are or what hospital you've seen a paediatrician at, but I can definitely say from experience (personal and medical) that the best person to take you seriously would be a specialist paediatric gastroenterologist, which you will only find at a big city teaching hospital with a very big specialised paediatric centre. I could have cried with relief (actually I think I did) when we moved area when ds1 was 8 months old and we first saw the specialist in Cardiff, who had seen babies with this sort of feeding refusal and just understood us and what we were going through. His advice was to treat with omeprazole and neocate, in case of him also having dairy allergy. Ds1 didn't have symptoms of eczema or diarrhoea either. He was also constipated and on a hefty whack of laxatives - both reflux and lower fluid intake will cause this. So personally, although I hear what your health professionals are saying with regard not having other symptoms suggestive of dairy allergy, my opinion is that every baby is different and not all babies follow the manual. Unfortunately the hypo milks do taste grim. Ds1 still fought with the neocate, but over time he came to like the taste of it. I honestly never thought I would see him willingly drink any milk, but at the age of 15 months he just suddenly started drinking it. He only started to eat solids at 15 months too, before that he never ate anything so we were reliant on small volumes of neocate for his growth only. Despite having way under what he 'should' have been drinking, he continued to grow and develop fine, albeit pretty skinny.

Sorry I have rambled on so much. I just wanted you to know that it won't always be like this. When I was in your position I just needed to hear that someone 'got it' and could reassure me that there was a light at the end of the tunnel, but no-one did until we saw the specialist at the major centre.

In reply to your question about the soya formula milk, no I don't think it would really be a problem to give it to him now that he is also eating solids. It is more of an issue when that is the only nutrition they are getting, and soya formula should be avoided in pre-term babies and babies with congenital hypothyroidism. The links with male infertility are very small and have only been demonstrated in the at risk groups above or in babies that are still exclusively milk fed.

I really hope things start to improve for you soon. Are you in a position to see a specialist privately? You would have to pay around £150-180 for a single consultation, but once you'd seen them once, you would then be able to opt back into seeing them on the NHS - it just enables you to see that doctor when they might otherwise have been out of your area or your district general paediatrician not feeling it necessary to refer you to them. All the best x

Gosh you poor thing. Also been there and it is absolutely awful. I think it's something particularly difficult to deal with because as a mother you feel awful you can't seem to achieve the most basic thing - e.g., feeding your baby. But of course it's not you!, there's a medical reason.

Your medical professionals have been spectacularly unhelpful. Sadly this seems to be a common experience unless your baby is plummeting through the centiles - it's not just you.

I second PP's recommendation to go and see a paed gastro if you can afford it. We only saw a general NHS paed but thankfully he was good and on the ball.

Neocate and Nutramigen AA are the worst-tasting milks IME. I would give the soya a go -what've you got to lose? Aptamil Pepti 1 and 2 don't taste anywhere near as bad as the elemental milks but the downside is they're hydrolysates and some babies still can't tolerate them.

Is there anyone who can take your DS for a short while to give you a break? It sounds like you're sorely in need of one. If you were anywhere near me (east surrey) I would do it for you. I know how utterly miserable it is.

Glad you are getting some excellent advice from pp who have been there. My dd is allergic to several things but EBF so i have cut things out of my diet to make the milk tolerable for her.
I am so sad that you have been let down by the NHS so spectacularly on this.
I recommend the baby and toddler allergy book - recently written by a mum in your position and full of great advice.
Also i think i suggested before but try allergy uk's helpline. For a sympathetic ear and for suggestions of reccommended paedeatric allergists in your area.

You are doing a.tremendous job! Remember this will not last forever, you will get to the bottom of it, get a.rest,.and feel like yourself again. Big hugs.

Thank you so much for your kind words. After wake ups at 2 and 4-6, they've got me a little teary; I'm absolutely exhausted and its lovely to know that people out there in Internet-land are supportive. It says a lot for my drs that virtual support is better than real life support, but ho-hum.

We actually live up north and quite close to a specialist children's hospital-this is where we saw the paediatric consultant. She was lovely and pretty convinced in her reflux diagnosis. My worry about going private-which is looking more and more likely, tbh-is that they'll see that we've been thought the NHs channels and think that, because we haven't got an answer we "like", we're paying for them to tell us what we want to hear.

I'm going to make an appointment with the GP (ugh) and beg for a trial of aptamil pepti. I know that DS will not touch the bad tasting ones-he's a stubborn wee thing and will only do exactly what he wants, when he wants. I'm not looking forward to the toddler years!

In the meantime, I'm going to get soya milk today and give it a shot. mummyxtwo you mentioned congenital hypothyroidism as an issue. I'm not sure if this is relevant, but I'm hypothyroid (since 15) and take quite a substantial amount of thyroxine-will this be a problem? I'm not a doctor (and I loathe mine) so, if it will be a problem, I best go straight for aptamil pepti.

DS is due to start nursery mid-August but I think I'm going to put him in early, just for one day a week (under the guise of getting him assimilated) so I can have some free time to regroup. DHis on holiday this week and let me doze from 7-10 this morning, which has made the worlds slightly less grey. I long for the days where I will actually get to sleep for more than 2h at a time.

Thanks again-it really means a lot to know that nice people are out there.

Is there any way you can get an appointment privately with Dr Neil Shah at Great Ormond Street in London? He's meant to be the absolute bees knees when it comes to these issues (have a look at CMPI message boards on t'internet). Yes it will cost you, but it's worth it just to hear someone say they understand and can help you, surely? Loads of people say he was the first person to actually listen to them and take their vague/strange symptoms and feeding problems seriously.

I am thinking of booking an appointment with him for my son when we go back to the UK next month.

Google 'Neil shah private clinic' to get his private secretary's number. Apparently he can get you in at quite short notice.

By the way, to get my son to take neocate (which he now loves), at 5 months old, we had to gradually add more and more to his bottles of hydrolysed formula and gradually increase until he was getting 100% neocate .....I can see this could be a problem for you though. I really hope you get some help soon, I really feel for you.

Could you add something to the nutrimagen to make it taste better? Eg Ribena?

I'm hypothyroid (since 15) and take quite a substantial amount of thyroxine-will this be a problem?
No not a problem, all babies are screened at birth in the UK for congenital hypothyroidism now via the heel prick test, so he would have a definite diagnosis of it.

Please don't be put off a private referral for the reason you mentioned. A specialist would not take that view at all, they would simply accept that you've seen another paediatrician but your baby isn't better, therefore you wish to see a specialist. Patients request second opinions all the time. They will just listen to your history, examine your baby and form their own idea of diagnosis and management, with your input. I truly recommend it in your situation where you aren't getting anywhere with the health professionals you have seen. We would have done the same if we hadn't moved area and consequently ds1 was able to have his care transferred to a big centre. I don't know where in the UK you are, but if you happen to live in South Wales I can advise you on the best people to see. Ds1's consultant has been fantastic, I always recommend him to patients.