Possible silent reflux, not sure what to do as doctors won't listen

[xMonochromeRainbowx]

So I'm desperate at this point as I don't know what else I'm supposed to do and was wondering if anyone has similar experiences.

My 4th baby is 19 weeks old/ 9 weeks corrected (born at 30+3) and I'm EBF. She's always had trouble with loads of gas but when she was about 8 weeks old/2 weeks away from full term corrected age (so about 11 weeks ago) she started having symptoms of silent reflux - screaming whenever she's lying down flat, making weird gulping/swallowing/wheezing sounds randomly. This then progressed to screaming for 5 minutes before every single feed, and she had a day where she completely refused feeding for about 12 hours. We went to the hospital but I was just given a syringe and told to try feeding her with it, it worked so we were sent home.

But this then started happening more often, she was refusing feeding every 2 weeks and she now has 1or 2 days every single week where she's being syringe fed after she completely refuses feeding for many hours. She will also scream and cry for most of those days, and then just fall asleep from exhaustion from screaming. Even on days where she's actually feeding it takes 10 minutes to get her to feed as she'll just be screaming and crying at the start. She can't be put down on her back basically at all ever as she just screams.

I've been to the GP, out of hours GP and peds assessment unit about 10 times and I always just get told that 'she's not dehydrated so you can go home'. Yes she's not dehydrated because I'm feeding her with a syringe. I don't understand what I'm meant to do, should I not syringe feed her so that she actually does become dehydrated and then they'll do something finally?

In the last 3 weeks she's also dropped from 50th to the 25th centile which obviously can be normal, but in this case I'm sure it's because she's literally not eating twice a week.

TIA xx

Have you spoken to the HV?

Yeah but they just said to make a GP appointment and obviously I did but it was useless, and to come back to weigh her in 2 weeks

Have you tried joining a lactation group or trying a lactation consultant?

Reflux and wind are symptoms of something else, not a stand alone cause of being unsettled.

Having experienced similar, I would:

speak to HV

get your latch checked by a professional and get baby checked for tongue tie - make sure the person who checks this is trained and qualified to check for ties and assess oral function/tongue mobility.

if latch is good and there is no tongue tie, or issues persist when latch is tweaked and tongue tie is released and healed, consider allergies.

I hope baby is more comfortable soon.

I did see a LC when we were staying in NICU, she said everything looked great - latch, no tongue tie, there is a good supply (I used to pump in NICU and also pump now when she has to be syringe fed). I did EBF all my other children including my third who was also premature (31 weeker) and never had any problems so idk what's happening this time 😢

Thanks, I forgot to say but yes I've had feeds observed by nurses and LC in NICU and they said everything was fine, also the HV was there while she was feeding when she came for a visit and she said everything looked great as well. She was also checked for tongue tie by speech and language after leaving NICU as she was having some problems with refusing feeding in NICU as well (then everything was fine after a few weeks until she was 8 weeks old).

If you can afford it, go private. Then forward on diagnosis and prescription to your GP. They don’t have to accept that diagnosis but in both of my friends cases they did.

Another vote for booking an appt with a private IBCLC.

I’m so sorry, I was in a similar position 13 years ago. We eventually ended up at A&E during an episode and were finally listened to. We got sent straight to the paediatric ward for monitoring after that, and fortunately the consultant was really switched on and supportive. Sent home a day later finally with the right meds, and the consultant wrote to the GP, who she was horrified with because it should have been straightforward. Keep pushing!