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Reflux & feeding refusal. Could it be dysphagia?

(1 Post)
milamum Sun 24-Jul-11 13:19:58

Hi everyone,

I have posted this on General Health board but then realised there is a separate board for Children's Health so am re-posting here in case anyone reading this board can help. I hope this is OK?

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. x

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