Reflux baby refusing to feed

[milamum]

Hi everyone,

I have an 18 week old baby girl Milena who suffers from silent reflux. Her symptoms started when she was 4 weeks old and we've been through the usual medications - Gaviscon (didn't help at all), Ranitidine (helped a little but then became less effective with time despite increasing the dose to max for her weight and increasing with weight gain). GP referred us to a Pediatrician but while waiting for the NHS appointment to come through we decided to go private as didn't want to see LO suffer for weeks until she saw the NHS Ped especially as her feeding was getting more difficult (she's EBF and has been refusing feeds due to reflux pain, or so we thought!). The private Ped put her on Omeprazole (15mg per day taken am & pm), which helped with her reflux pain. We then transferred to NHS and continued with this treatment.

Omeprazole controlled her reflux well and she's been pretty symptom free since mid May HOWEVER her feeding refusal has gotten progressively worse over the last couple of months. We thought we needed to increase the meds so went up to max on Omep, this didn't help. We then decided to trial Lansoprazole (7.5 mg once a day) so see if her feeding will improve on it but unfortunately it's the same as Omep, her reflux symptoms are controlled but she's still refusing to feed! For the last few weeks I've had to sleepfeed her during day naps and at night. When she's not asleep she'll take 1-2 oz from a spoon, cup or syringe (she won't take bottle) so I also express and feed her a little when she's awake. It's basically 24/7 trying to feed her! I know it's not an issue with a fast let-down, not CMPI or any other food intolerance as I've done a Total Elimination Diet but this didn't help to improve feeding either! I don't think she's got breast aversion as she does try to breastfeed, but then pulls off after 1-3 minutes crying so something's causing her pain/discomfort. Also, she'll only eat small amounts from spoon/syringe so it doesn't seem to matter how the milk is delivered, she just won't eat more than 1 - 2 oz at a time and that's a struggle to get into her.

After spending ages on internet trying to figure out what it may be, I came across dysphagia (swallowing disorder where a baby aspirates milk into their airways and/or lungs) and so I'm wondering if that's what she has in addition to her reflux. I'm trying to get her an appointment with a Language and Speech Therapist to have her swallowing and feeding assessed but wondered if anyone's LO had similar difficulties (and it wasn't dysphagia) or has dysphagia. I'm extremely worried about her and am at my wits end trying to figure out what the problem is. Needless to say the doctors are being very disinterested as she's been putting on weight (albeit slowly) so they don't care about how much effort it actually takes to get the milk into her! Any thoughts or advice anyone may have would be greatly appreciated.

Thank you so much for taking the time to read my message!

My friend found this site a while ago that might be interesting reading, it's 4posts all long, but could be something worth investigating?
Tongue tie
They probably did a basic check to see if there was an obvious tongue tie, but I don't think many people actually check further or know much about it.

thank you hwihte6. It did cross my mind a while ago that dd might have posterior tongue tie (so not obvious to an untrained eye). I had a lactation consultant have a look at it and she did't think dd had it but admitted she was not an expert on it so may have been wrong. I'll ask a HV to have a look at it too just in case.

It sounds like food aversion or dysphasia caused by an allergy. How long did you try the elimination diet for?

It's just my DD had similar problems and has finally been told she has cwp allergy and she is in the 50% that also react to soya, which is in lots of things like bread. May be worth thinking about? It's definitely not right though and needs investigating. Good luck.

Hi
My DDwho is now 18 months had a very similar problems to what ur DD have. Countless infections tested for reflux many hospital appointments. My daughter ended up having a endoscopy with the ENT surgen and she has a very very rare condition called a larengyle cleft type 1. All her liquids needs to be thickend as the thin liquids could go through the cleft and into her lungs.

We are due in manchester next month for another VF a feeding xray. Hopefully this will tell us wether surgery is needed or she can carry on with her treatment. Also I have a refluxe pillow for her cot which keeps her upright.

I would ask to check her thoart to see if there is anything going on there.

hi heathermumof3 and ChocaMum, thanks very much for your responses. I have wondered if there is anything going on with her throat/swallowing but it's really hard to persuade her Paed to do any tests! We have an appointment with a Language and Speech Therapist soon so hopefully she'll be able to offer some advice and whether she thinks further tests are necessary. I did notice that she likes her milk a bit better if it's thickened with baby rice which I then give her from a spoon, I have tried thickening her milk with Carobel but she didn't like it, I'll try again though.

I have been dairy and soy free from mid May and then did the total elimination diet for 2.5 weeks (you are supposed to do it for 2). While dairy/soy free, dd's reflux symptoms and feeding didn't improve but some of her other symptoms that made me think she maybe cmpi or mpsi, such as red watery itchy eyes, rash on the forehead and blood specs in her stools did improve and have now reappeared as had some dairy over the last couple of days. So it looks like I'll have to go dairy/soy free again while I'm bf. It's just a shame that even after 2.5 months it didn't improve her feeding refusal so I'm thinking it's caused or aggravated further by something else.

If she has got eosinophilic oesaphagitis from cwp then I was told to do exclusion for at least 6 weeks with the omeprazole as well. You poor thing, I found the whole not knowing stage really difficult to cope with.

We had seen general paediatricians and even paediatric allergy specialists who didn't pick up on why all this was happening. After doing my own research I asked our GP to refer us to dr Helen cox at imperial, marys hospital in Paddington. We are finally now getting somewhere but it's been a long road. So if you are finding your paediatrician unhelpful don't be afraid to ask for another referral. I know one of the gp's was getting fed up with me because she couldn't understand why after seeing two different specialist I wanted another referral. But until your child is better you can be as 'difficult' as you want IMO because there is nothing more important than your dc's health.

Good luck and HTH. :)

thank you ChocaMum, I was dairy and soy free since mid may so about 2 months so I don't think her reflux is caused by an intolerance as unfortunately her reflux symptoms didn't improve however, I do think she's got a mild cmpi as her itchy eyes and face rash were much improved when I was dairy free and now that I've had some over the last couple of days, they are back so I'm going back to dairy/soy free diet.

I will ask the GP for a referral for second opinion as it's just not good enough that our Paed (who is actually very nice but doesn't take reflux seriously as babies grow out of it and he keeps telling me that everything's fine, dd's on good meds etc and he is just not listening to what I say about feeding difficulties we are having). I didn't know first time round that I could have chosen a hospital where we get referred to so GP just referred me to the local one but I'm really keen on GOSH so will see if can get a referral there.

I think if you've done 2 months then that should definitely be long enough so I agree it's probably something else I'm afraid. We were seeing lovely doctors too but they kept putting everything down to 'maybe it'd just your DD and she'll grow out of it.' we did try this as being told by 2 different specialists we felt like maybe we are being OTT. But when she kept losing weight and she actually started regressing in her development I got fed up.

You can ask for a referral to any hospital but not tertiary referral centres like GOSH I'm afraid. They are only available for specialists to refer onto, not gp's. If you can concvinve your paediatrician to do a referral their then Dr Neil Shah is a gastroenterologist at GOSH. He is really lovely and I think he could hopefully really help your DD, he has an amazing reputation. Anyway it sounds like a gastroenterologist is who you need to see at the least.

Remember to take calcium supplements if you've gone dairy free and you're BF. Good luck and please keep us posted on any progress.

Ahh, that's a shame about GOSH ChocaMum, thank you for letting me know! It's unlikely our Paed will refer us there, I tried getting him to refer us to a GI Paed but he said no so far as dd isn't loosing weight so he doesn't see a big problem with her! I'll speak with the GP and see if he can actually refer us to a GI, even if it's at our local hospital. Thanks again.

Losing weight is the extreme case scenario you want to avoid. No problem at all, I hope it helps. Please keep us posted on how you get on, it will be interesting to know what the final outcome is for your tiny DD. :)

Thank you ChocaMum, I'll keep you posted. :)

Hi Milenamum, I've just come across your post (5 years later...) and I'm wondering how you got on. You have described my situation with my 14 week old son almost exactly. I'm at my wits end trying to figure out what's going on with my boy.

I hope you are doing well now x

Hello Milamum and Jenjen2016. I know this was posted a few years ago but wanted to check what happened to your little one? What did you guys do to improve your little one’s problem?

My son who’s 4 months now has been choking and gagging while or without feeding ages ago, went to Peds and he didn’t take refluxes as a serious situation and said he will outgrow and improve later. Few months in and its only just getting worse. Now he’s refusing to feed from the bottle at all. even when he’s sleeping he cries and fuss when he comes in contact with the bottle teat ‘even when asleep’!! I don’t understand why peds have to underestimate the situation of a baby just because it’s just ‘gagging and choking’ which he said ‘it’s normal for baby’ i dont know what to do. its so stressful as my baby doesn’t drink milk much anymore

Hi Sarahhmm, Milamun And Jenjen20216.

I am experience a very similar situation to you with my DD. She is 3 months old, suffers from reflux, she is taking Omeprazole. She just starts refusing to feed... I wonder if you could please shared some more details on how your experience.

My daughter was born with a low weight and is been always in a low percentile. I have noticie that she has not put much on weight over the last 2 weeks and I am worry she will start dropping on weight...
i would really appreciate anything you can share!
Thank you!

@Natnatt the original posters may come back but haven't so far.

You may be better starting off with a new thread about your DD where you can tell us more of what's been happening