Reflux & feeding refusal. Could it be dysphagia?

[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 her 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 long and rambling message! I didn't mean to write a book! LOL

Nataliya x

[MummysTooTightToMention]

Hi. That all sounds really stressful for you. I just wanted to say, my DD is now 8 months and went through a spell of similar behaviour, i.e., trying to latch on, then turning away from the breast and screaming. Some times of day were worse than others. I think it was around 5/6 months and it gradually improved.

I remember other bf mums saying their dcs had little phases like this too.

I did a lot of googling and tried various things to help but like so many things, it just sorted itself out after a few stressful weeks.

I wonder if your hv could observe feeding and speak to the gp- mine is great for things like this. do you have any breastfeeding support locally, NHS/NCT/LLL?

I don't really know about intolerances but someone on here will- breastmilk still contains lactose, so could that be causing probs maybe?

[milamum]

Hi MommysTooTightToMention, thank you for replying! I really hope that you are right and that it's a phase as you know how stressful it is when your baby is struggling to eat. Unfortunately I'm not as lucky with my HV or GP, and I have spoken with NCT and LLL and also saw a private lactation consultant who was pretty stumped at the problem and none of them could really help so I'm wondering if it's actually a physiological problem causing her pain when she eats. Thank you for suggesting lactose intolerance, I'll check it out.

[blueeyedmonster]

Hi, my ds had silent reflux and by the time he was 8 weeks he was refusing to take milk completely. We got him diagnosed at this point.

For a long time after though he would still scream, arch and refuse his milk if he saw the bottle coming (he was bottle fed). It would take me an hour to get an oz into him between me trying to calm him down and tryig to persuade him to drink. This did calm down finally but I am convinced (and am sure I may have been told too, was a while ago now) that he was associating his milk with pain. He would start on seeing his milk coming towards him.

She sounds just like ds was how you've described her. Ds also put on weight slowly but the HV were never that worried about it.

I used to dread it when it was time to feed him as I knew this battle would be on again and it reduced me to tears on numerous occasions.

It did get better with time though and I can say he is now a healthy 3yo with no problems.

[blueeyedmonster]

Forgot to say he was on gavscon and ranitidine and we also gave him colief.

[narmada]

Oh honey, that's the pits. I know, I've been there with DS. Poor you. It's SO stressful trying to feed a baby who doesn't seem to want it. It becomes your whole life. With DS two things helped - increasing his lansoprazole dose and giving it first thing in the morning - on a completely empty stomach and leaving a clear 30 minutes to one hour before feeding him afterwards (never an issue as he would never drink on his own accord anyways!). He also turned out to be cow's milk protein intolerant, but we only found that out through trial and error.

I think if it were lactose intolerance your DD would have diarrhea and would be quite ill - congenital lactose intolerance is really rare and you would hope someone would have picked it up before now if it was that.

I know you said you've done a complete elimination diet, so you prob don't want to go down that route again, but jsut wondering, did you cut out soya in all its forms?

The other thing I was wondering, and here I am just making a completely wild guess, is whether she could have gastroparesis, AKA delayed gastric emptying. I think this is often associated with reflux, and means that you feel really full really quickly. Our friend's DD is suspected of having this. Might be worth asking the paed when you do see them whether she could have a gastric emptying scan and/ or some sort of swallow study?

[milamum]

Hi blueeyedmonster, thank you for your message. I also dread the feeding times, we'll either have a battle or if I'm sleepfeeding she'll often be too deep asleep to get a proper feed so I get really stressed and upset about it which doesn't help the situation! I'm really hoping that she'll grow out of this. It's just really difficult to have any perspective when you are in the middle of it all...

[milamum]

Hi narmada, thank you for your response! I also give lansoprasole first thing in the morning and try to leave 30 mins before the next feed but it's unlikely her stomach is completely empty as I feed her several times during the night to get some extra milk into her and her last feeding of the night is usually around 5.30-6am. I'll see if I can change that so that she doesn't eat for a couple of hours before waking up around 6.30am - 7am. It's interesting about increasing the dose, I've wondered if we should go higher, but then read that PPIs sometimes suppress appetite or that a larger dose might increase the side effects (esp wind and burping which are a big issue for dd), it may be worth a try though!

When I did my elimination diet, I've cut out all the food groups that may cause allergy or intolerance including soy so don't think that's it. And from what you said about lactose intolerance, it's unlikely dd had it as she doesn't get diarrhea.

We were prescribed Domperidone to speed up gastric emptying but after a 2 week trial stopped it as it didn't seem to do anything in terms of improving her symptoms or feeding. It maybe worth trying it again with a higher dose though, will check with her ped at the next appointment.

It's just a nightmare trying to figure out what is causing this as I can't just watch her suffer and not do anything even though I realise that possibly all that's needed is time.

[HarperSeven]

Has your paed suggested specialist reflux formula? Reflux is a mechanical problem... formulas which are designed to 'stay down' with the inclusion of some kind of thickening agent, like rice starch, can help a lot.

[narmada]

How much does your DD weigh milamum? Is she gaining weight along her percentile line or is she veering downwards?

I wonder if there's any mileage in just trying to feed her in her sleep for a bit, and just letting her take what she will when she's awake?? It might de-stress the whole feed thing a bit. I reckon you would really benefit from seeing some sort of feeding therapist - your hospital might have one, ours does (Kingston upon Thames) so may be worth asking paed about.

[narmada]

Sorry, not clear, I mean, maybe worth concentrating on sleep feeding for a bit to take the pressure off you all, and not doing the syringing etc if it's stressing you all out.

[milamum]

HarperSeven - thank you for the suggestion but as I'm breastfeeding her pediatrician said it was best to carry on as breast milk is easier digested so better for reflux babies. TBH I'd have considered switching to formula if dd took a bottle and the formula helped her but in the meantime I am also expressing so will try thickening ebm with Carobel.

namada - unfortunately she's not taking enough while sleep feeding as she very quickly goes into deep sleep and stops sucking so I feel I have to supplement to make sure she's gaining weight. I try not to force feed her when she's awake but have to use lots of distractions like singing, dangling toys and even TV sometimes (obviously try to limit TV exposure as much as I can!) She was born on 50%ile, went up to 75% at 1 month and then back to 50% and then slightly below. She's managed to stay on 50th %ile or just under for the last few weeks but it's a struggle to maintain this weight gain and some weeks she looses weight and then catches up so I constantly worry about it. She was weighed 6.54kg at 18 weeks.

I'm trying to get her an appointment to have her feeding assessed and am waiting to hear from the hospital.

[HarperSeven]

milamum that's interesting - it appears paeds have different views as my close friend was advised the exact opposite - that she really should introduce specialist formula and stop breast feeding. She didn't take the advice, and the paed eventually told her there was no point making further appointments to discuss the unresolved reflux problems until she took the advice to use formula instead.

My DS had reflux and we found specialist formula a breakthrough. To us it was far preferable to use formula instead of Gaviscon / ranitidine etc. Thankfully it worked.

DS was born in the 9th centile, stayed there until we resolved reflux problems, since then has stayed in the 50th for length and weight.

[milamum]

thank you HarperSeven! I think that's because dd doesn't seem to have any symptoms of food intolerances and the private GI Paed and NHS Paed agreed that she probably didn't. I also did a Total Elimination Diet for 3 weeks but there was no improvement with dd's feeding. However, I did buy a can of Neocate a couple of weeks ago just to try it and see if it made a difference and, if it did, was going to ask GP or Paed to prescribe it. Well, dd didn't like Neocate at all (can't say I blame her, it made me gag when I tasted it! LOL), however, I've been mixing it with EBM and she takes it like that so the EBM must be masking the taste and I'll be doing this a couple of times a day to bump up her calorie intake a bit as she only gained 3 oz in the last 2 weeks due to her feeding refusal. A big issue as well is that she just won't take the bottle despite me and DH trying for weeks to get her to take it so switching her to formula doesn't seem possible at the moment.

[HarperSeven]

milamum - You sound like you are coping well, I have to say. I was a total wreck when DS had reflux!
If you do have luck with getting her to take the bottle then I really recommend the formula we used - Enfamil A.R. (anti-reflux) You can find it at smaller chemists or order it. It contains rice starch to thicken it. It's not too fiddly to prepare, though you need variable flow teats as it's too thick for regular teats. DS's consumption rose markedly once we introduced Enfamil & his symptoms during feeding (crying/stretching out/arching his back) just disappeared.
I also recommend a book called The Sensational Baby Sleep Plan by Alison Scott-Wright, which contains advice for helping reflux/silent reflux babies. Alison has a web site and does home visits if you get that desperate!
As for the bottle refusal - have you tried different kinds? There are some which are said to be better than others for making the transition from breast to bottle. Like these (I haven't tried them): www.amazon.co.uk/Learning-Curve-Y4561A2-Breastflow-BPA-Free/dp/B001QVG9YS/ref=sr_1_45?s=baby&ie=UTF8&qid=1311714858&sr=1-45&tag=mumsnet&ascsubtag=mnforum-21

[HarperSeven]

...or this bottle: www.amazon.co.uk/Medela-Calma-with-150ml-Bottle/dp/B004EWFCEY/ref=sr_1_62?s=baby&ie=UTF8&qid=1311715045&sr=1-62&tag=mumsnet&ascsubtag=mnforum-21

[milamum]

hi HarperSeven, thank you for the suggestions on the formula and bottles! I'm not really coping that well, have got anti-depressants from GP about a week ago as think have developed depression because of dd's food refusal but haven't started taking them yet as am not 100% sure whether I'm depressed or just very stressed out by it all! I just keep thinking that I need to find a solution to help her but as it's all trial and error, it takes forever to know if something's working or not. Unfortunately we tried just about every make of bottle /teat out there with not much luck so far! I will try enfamil ar (and will pump in the meantime to maintain bm production), who knows maybe it'll help... thanks again.

[HarperSeven]

It is all trial and error - you just have to know that there will be an answer and she will also eventually outgrow it. You are searching for the answer and trying to help her: you're being a good parent.

Reflux/food-refusal can leave you very demoralised as a mum. All you want is to see your baby take milk and grow and when they don't you can feel quite desperate. Once we had reflux licked I can't tell you how completely elated I would feel to see DS almost finish his bottles. It was joyous.

Anti-depressants lift the clouds when you're feeling a bit hopeless. Don't be worried about taking them if your GP thinks they're ok for you, it doesn't mean you will be on them forever. When I said I was a total wreck I meant it! I had PND and it all came to a head when the reflux hit.

[milamum]

Thank you HarperSeven. Well, had a bit of a mini nervous breakdown today as dd had only about 10 oz today and is now in bed for the night, have no idea if I'll manage to get much more into her today! :( OH insists I start taking the antidepressants and I'm thinking he's right as I'm just not coping well with this and it won't help anyone if I start falling apart. Thank you again for the words of support!

[HarperSeven]

How familiar this all sounds. I really feel for you - I think you will benefit from the anti-depressants, you will notice a difference in a matter of days.