Silent reflux advice

[stargirl1701]

Hello. DD (20 weeks) was diagnosed with silent reflux at 10 weeks. At that point, her feeds were a nightmare - screaming, arching, refusing more that 2oz. She was prescribed Ranitidine.

Over the last 3 weeks we have been seeing new symptoms that concern us. She is vomiting a lot - both quantity and number of times in a day (25?). She is refusing to nap during the day and will sleep 10-20 min x3. She often starts screaming in her sleep and when we lift her we have to shout her name and tickle her feet to waken her - once awake she vomits.

I have 2 GPs who have told me not to worry. Both DH and I are worried. Her weight is checked frequently so the dose of Ranitidine is correct. She was 6.7kg this week and dose is 0.4ml.

Are we crazy? She is pfb.

Anyone?

At all?

Prop her cot up (we used books). Let her nap in a sling if you can. How is she doing at night?

We have books under the crib. We use a Kari-Me sling. She sleeps 11pm till at least 8am although often sleeps longer. I think she is so exhausted that she doesn't wake.

Do you need to wake her?

I only wake her if I have to. For example, I had to wake her on Wed to go to the GP for 10.20am. Should I be waking her?

Not in my opinion, no, but I'm no expert, you're just describing similar to one of the things I went through with DS. It does get better.

Slowly.

How frequently do you try to get her to nap?

When she shows tired cues - rubbing eyes, burrowing into me, yawning. I manage to get her to sleep after about 20-30 minutes of screaming and she sleeps 10-15 minutes then starts screaming again.

Try 90 minutes after she wakes up, even if she was only asleep for a few minutes.

and have a hug. It's a horrible, what you're going through.

Thank you. I'll give that a go.

I would go back to GP and ask fr consultant referral, she may need to be on stronger mess. I had one baby with lots of vomiting who improved with ranitidine and gaviscon, but one baby who had silent reflux, and needed stronger meds.

Is she gaining weight, and is she having wet nappies. If so get meds checked, and don't worry, she is sleeping in the night and gaining weight & weeing. If she is not, then you could discuss whether solids might help with feeding and weight gain.

This may not be the right solution for you, but it helped us. My DS who was ebf to 24 weeks, was weaned into solids and topped up with ebm and then formula once the bm had run out, due to v poor weight gain. this was because my milk supply was not good due to poor feeding due to silent reflux. He was instantly better, and I continued to feed and pump to get my supply up, and was able to drop the top ups and continue with bf until he was 17months.

It is awful to cope with, stressful and exhausting, so lots of sympathy OP. continue to push the GP's for support, and I found LLL and TikTok on here very helpful too.

I will try GP again. She is gaining weight on her centile and we get plenty of wet nappies. She eats every 2 hours like a newborn.

I'm trying to get her to sleep now. She is tired but fighting. I'm in the nursery with the curtains shut. She woke at 6am for food and then slept till 9.30am.

It's so hard. I didn't think having a baby would be like this. I'd never heard of silent reflux before.

Right, 15 min of screaming and she's asleep.

Screaming again. 10-15 min? Jesus.

Still crying. And me too.

I'm so sorry that things are rough for you now OP.
I second whoever suggested that you ask for a consultant appt - talking to other reflux mums it seems doing your sobbing at the GPs gets things escalated! We have found a great consultant who doesn't make us feel like we are in any way crazy and things do improve (although it has been slow and sometimes felt like it would never end) there are other meds to try, for instance.

Go straight back to docs, my own son had reflux and I have looked after many babies with both silent and 'normal' (puking) reflux. She may need infant gaviscon which may help keep the milk down, she may also need Domperidone and/or Omeprazole.

This page is useful as it describes what each drug does:
www.livingwithreflux.org/medications_for_reflux.html

My own son improved dramatically when he was weaned.

Personally I wouldnt wake her at all unless there are concerns about weight gain, or if it is unavoidable.

My son was a 'little and often' feeder as he just couldnt handle bigger feeds, and on the rare occasion that he did take more milk he just puked it up anyway.

It is hard but it DOES get better, will she nap in the pram? (tilt her so she is not flat in the pram). At least she sounds as though she is more peaceful at night for you (I know that doesnt make it all OK but a lot of refluix babies dont sleep anywhere near 11pm-8am so although it prob doesnt feel like it, it could be worse).

I would keep her tilted at all times - sleeping, feeding, changing nappy etc, and certainly don't lay her flat for at least min 20mins after each feed.

Hope you get things sorted, reflux is horrible! PM me if you would like to, I've been there (and been in tears many a time too).

Oh, and try to get OH to go with you to a dr appt, sadly sometimes they dismiss you as tired mum, and as ridiculous as it is, having a second person say, no, this is not right, can help get you heard. We kept pushing when we were told that it was normal - although quite a few 'pros' almost had me convinced that I was overreacting. I'm so glad we did.

www.pollymoore.com/

Hang in there, it doesn't have to be like this. You can try different medications, different thickening agents in her feeds and different formula till you find the right combination that works for her. It's headwrecking but you get there eventually.

I went through a phase of crying with DS at every feed. He was almost admitted to hostpital a number of times for dehydration. But once we found the right medication, the right bottles, the right formula, and thickener, he turned into the sunniest, happiest little dude you could ever hope to meet. You WILL get there too : )

Go back to the GP and refuse to leave till you get a referral. In the meantime, try thickening her feeds with Cow and Gate Carobel. It thickens the formula so it doesn't come up as easily, and made a huge difference to DS. You'll need a faster teat though because the stuff is thicker. It's available over the counter.

Hi everyone.

I phoned the GP today (and sobbed down the phone). The GP advised switching formula to SMA Staydown for Reflux milk. If we see no improvement by the time the HV is here on Tuesday then a referral will be made to a specialist.

I went out for a drive (she always falls asleep) and met up with two mums. One of them has loaned a rocker chair which she seems to like. She is always more settled when moving. She cried to get out when tired so DH is now marching her round the house in the pram to try and get her off to sleep.

She has slept 50 minutes in total today. That's loads more than usual.

P.S. Thank you for the advice. My family RL help are suggesting just leaving her to cry it out (20 weeks ffs) and replacing the milk with purées - both of which I don't want to do.

Well, she took a bottle of the reflux formula and then slept from 8pm till 11pm. First time ever!

So sorry you're going through this. Reflux is terrible and GPs really don't understand it (in my experience). We had to contend with reflux and had such a terrible time and made many mistakes. Weaning went terribly for us and, because food was painful for DS, he became a resistant eater and wouldn't let food near him for a while.

You need help ASAP. If you can go private, mike Thomson at the Portland hospital is a good gastro pead and can get you on the right meds. Someone called Alison Scott wright has a book about sleep. Her approach to sleep wasn't for me but it has a good final chapter on reflux.

Good luck x