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Reflux & feeding refusal. Could it be dysphagia?

(7 Posts)
milamum Fri 22-Jul-11 21:25:41

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

CombineArvester Fri 22-Jul-11 22:07:44

Hi Nataliya. My DC2 had severe reflux, medication trail like yours, settled on omeprazole but it wasn't life-changingly brilliant. DC1 had reflux but not as bad. I found with both of them that 16-20 weeks was the peak of reflux symptoms. I think they have a growth spurt, which renders the current dose of medication less effective, at exactly the same time that they realise that it is feeding that causes the pain and so try to avoid being fed. Unfortunately for them they feel hungry but they don't want to feel pain, its so sad.

Both fed terribly badly at this point and DC2 did not gain weight for a month. He was feeding a tiny bit, trying to feed and then screaming and pulling away all the time. One woman had a go at me for force feeding him once, I told her he hadn't fed for 6 hours and he was hungry but screaming because it was hurting him.

All I can say is that they (and we) did survive this period. I ended up giving him calpol for pain relief as well as all the other 9 million medications. I had to feed him in a dark quiet room alone and I used to play this soothing musical toy to him as I was feeding him to try and settle him. Nobody else could feed him where before DP had been giving him one bottle a day.

At 5/6 months they started to feed a lot better. Not 'normal', but so I could feed him out and about and with other people present. There is light at the end of the tunnel. It's a horrible horrible time, make sure you have lots of support and you are satisfied you have done everything possible re medication. The truth is though, sometimes omeprazole just isn't a miracle cure and as its supposed to be the strongest thing they can use, there's nowehere else to go.

discrete Fri 22-Jul-11 22:17:43

Have they not recommended early weaning? AFAIK it's fairly standard to start reflux babies on solids at about 17 weeks - certainly that is what the consultant paed gastroenterologist who put ds on omeprazole recommended.

I also used to give him some ebm thickened with baby rice before each feed to help keep the milk down.

Omeprazole gets rid of the acid, but ime not of the mechanical reflux - ds was on metaclopramide (sp?) too to help with that, but it's no miracle cure. The solids really did seem to provide ballast and stop the food going up his oesophagus so much.

Ds also seemed to have a recurrence of reflux when he was teething, which started at about 4 months. That gave us a bad week or so each time (and panic about the omeprazole stopping working) but then he would cut the tooth and get better again.

milamum Sat 23-Jul-11 20:56:08

Hi, thank you for replying!

CombineArvester - your story sounds very similar, the way I feed her is the same, alone in a dark quiet room with no distractions. I am very happy that Omeprazole's helped with her reflux symptoms but I had very high hopes that it would sort out her eating and unfortunately for us too it hasn't proved a miracle cure. Have to be thankful though that she's not in constant pain any more! I really hope that she'll start getting better soon, it's so heartbreaking to watch you baby hungry but not being able to eat... We are pretty much stuck at home at the mo, the longest we can be out is a couple of hours between her feedings. A lot of people don't understand what you are going through, they say things like she'll eat when she's hungry or that she seems fine and I'm overreacting but they don't see what goes on behind the closed doors and how difficult it is to get her to eat even a little bit.

discrete - our Ped also recommended early weaning and we started with baby rice at 17 weeks. She enjoys it but so far it hasn't really made much difference to her milk intake and seems to give her quite horrible smelling gas so I wonder if her system is not ready for it. We were also prescribed Domperidone to speed up gastric emptying, tbh it didn't make any difference just made her more wingey/irritable during the day so we stopped after 2 weeks. I haven't heard of Metoclopramide so will ask the Ped at our next appointment if he thinks it's worth trialing it.

shitmagnet Sat 23-Jul-11 23:52:53

Message withdrawn at poster's request.

shitmagnet Sat 23-Jul-11 23:54:04

Message withdrawn at poster's request.

milamum Sun 24-Jul-11 09:33:06

thank you, shitmagnet! It's really good to know that your dd outgrew her problems and is doing so well now. My dd also makes gurgling noises and coughs when eating and also has milk dribbling out of her mouth after an oz or 2. I just bought some Carobel the other day and we tried thickening her milk to "thin" consistency but dd didn't want to know! smile Will definitely try again, maybe its an acquired taste! I tend to get carried away a little when feeding her so need to watch it, there is a fine line between persuasion and force feeding, really don't want her to get any aversions so will be more patient and try to chill a bit more about it! lol

We tried probably every make of a bottle out there, dd takes best (but still with resistance) medela, nuk and playtex so we are alternating them hoping she'll accept the bottle eventually and drink more than 1 oz from it as I need a break from sleep feeding her all the time!! I'm sure early weaning works great for some babies but for us doesn't seem to make much difference so we've decided to slow down and wait till dd's a bit older, for now will carry on with just baby rice once a day.

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