Silent Reflux in 5 week baby, please help me :(

[Gab3478]

Hi all

I'm new to this site however have followed silent reflex threads in earnest over last few weeks.
My daughter is 5 weeks old and pretty much from the start I have suspected something is not quite right, and lately things have got a lot worse.
She is ff and 8 times out of 10 she screams off the bottle and then continues to scream for as long as she can before we can finally settle her (can be hours). During these times I continually offer her the bottle and she is desparetly trying to gulp it down before her little face starts paining and the screaming starts again, also with back arching. She also hiccups a lot, has a little 'throat clearing cough', and the hardest thing of all is a gulping noise she makes before looking like she has chewed a wasp - this continually wakes her up night and day and therefore she sleeps very little, and even then it is mainly on me.

So, I have been to the GP twice and seen 2 different HV. They have all told me it is wind (apart from one GP who saw I was about to have a breakdown and gave me Infant Gaviscon before rushing me out of his office). After nearly melting down on Weds this week I took her to a&e after she was choking on her bottle. They kept us in overnight and after seeing her screaming fit on Weds eve they diagnosed SR - I feel so relieved after knowing in my head this is what is wrong.

However (sorry for long post), they put her on Enfamil A R from Weds night onwards, and she has just had the mother of all screaming sessions trying to pass a poo (started from 5am). It was hard and had blood in so now I'm loathe to continue the milk. We have also been given Ranitidine and Domperidone.

Please can people give me their advice - should I carry on with the milk? she had another bad night when drinking last night so I don't think it even made a difference. How long do the meds take to work? I havent given her any yet as wanted to do some research first, I feel so bad as she is so little but I hate seeing her in pain all the time. Also when feeding her I can sometimes get a 'good' feed which entails her wriggling and writhing as she is drinking and making little grunts (but no screaming hence the 'good')...anyone else experienced this and could this just be wind?

I feel so low, I have never been so depressed in all my life. My OH is totally unsupportive and never believed me about the SR (he isnt with her all day and have to go through it 7 days a week!) when she was constipated this morning he just had a 'I told you so' look about him and kept saying 'well what did you expect as you changed her formula' so I now feel like the worse mummy in the world. Really am at my wits end with all of this.

Start using the meds now! Don't worry about researching them, they wouldn't give then to you if they were unsafe. My lo has silent reflux and it was hell to start off with. In my experience it took about 3 days for everything to start working.
Its horrible to watch them in pain, keep an eye on your lo weight and I really do hope things start to improve for you.

If her poo has blood in it take her to a&e

So sorry you're going thru this. My LO had SR and I didn't get much help either. My GPs were hopeless. Gaviscon didn't work for us and so we used ranitidine and domperidone. These didn't go that well either. If you are already seeing a pead at the hospital that is good. Finally going to a private gastro pead (mike Thomson at the Portland hospital in London) is what got me on track. Sorry that's my only advice!!!

Poor you, you sound like you are struggling on with very little support.
DS2 had silent reflux and the ranitidine really helped.
I would agree that blood in poo needs checking - silent reflux symptoms can be caused by a reaction to cow's milk protein which can cause damage to the lining of the gut which can mean blood in poo (Ds2 was found to be very anaemic when his silent reflux was diagnosed, we were told it might be due to some internal bleeding cause by the milk). Could you call the hospital and explain the situation? I was bfing and cutting dairy from my diet made a real difference - there are formulas available which might be easier for her to digest but you really need proper medical advice.
Good luck and don't be afraid to go and burst into tears on the doctor if need be - 5 week old babies can be hard work at the best of times and it sounds like both of you would benefit from getting this sorted so that you can start to enjoy your daughter.

Thanks everyone. The thing is the hospital helped but when they discharged us yesterday they just said if things dont improve to bring her back via a&e, so I have no direct 'contact' if you know what I mean and I feel really alone still. I just called the hospital re: blood in poo and they told me to take her to the GP so I have an emergency appointment this afternoon - I have little faith in them after what I have been through so looks like we have to start this whole process again! I just feel I can't take it anymore, I hate seeing her in so much pain all the time. I don't eat or sleep and am at the end of my tether. Sorry to rant it's just I don't get much support elsewhere so need people who know what it's like.

Poor you. I've been there and i know it is hell. Keep going back to your doc and try different things until something works. Perhaps a lactose free milk. Omeprazole is the medicine that worked for my dd, nothing else touched it. We got referred to a specialist at the hospital when she was 3 months old (referred as a result of something else but they ended up dealing with the reflux) and it was the first time we felt supported. Just over egg it if you have to to get the help you need.

Your husband needs to support you, you are a good mum and doing everything you can to help your little one.

You poor thing! Just wanted to let you know that you're not alone. My DS has silent reflux and was diagnosed at 4/5 weeks, despite my attempts over the preceding weeks to get him diagnosed; from my experience GPs are very ignorant with regards SR. In the end I had to take my little one to four different doctors before one recognised his symptons (one doctor at St. George's A&E actually attributed his getting so distressed and 'frustrated' during feeding to his "personality"!!!). At that point I was at my wits end.

Your husband should be more supportive - mine still isn't completely. Unless you're with the poor little one 24/7 and know first hand how exhausting, relentless, heartbreaking it is to see your baby struggling through the pain, desperate to feed, you just don't know.

Sorry not being much help, just wanted to let you know you're not alone! Would definitely recommend starting on the meds - we're on Ranitidine, which has made a huge difference. Things still not great this end so we're going back to the GP on Monday to hopefully get a prescription for domperidone. Just keeping pushing for help - nobody knows your baby as well as you do :)

I don't know anything about the forumla, my DTs were on nutriprem but they had SR and were on Domperidone, Ranitidine and Gaviscon. Use the meds, they will make a huge difference although IME the ranitidine took a few days to take effect. Also, if I recall correctly the ranitidine needs to be given 20 mins before a feed. When using the gaviscon, swirl it in the bottle instead of shaking which introduces more air and swirl it thoroughly to make sure it mixes or you will end up with lumps. You may need to change teats and / or bottles as the formula will be really thick. We used Avent variflow.

Keep her upright for at least 20 mins after a feed and let her nap in a bouncy chair instead of cot / moses basket. Raise the head end of her cot with books or a lever arch folder.

It's hideous to go through but at least she has been diagnosed and now you have the meds to help. If they don't, take her back to get the dosage adjusted.

I hope it gets better for you.

We also used sleep positioners from Jo Jo Maman Bebe which have a slight wedge - these were reccomended by SCBU...

You have my sympathies - DS has reflux but wasn't diagnosed until 8 weeks or so and that was after me badgering our doctor. Luckily he referred us to a gastro paed so I would definitely pursue this. However our waiting list was about 3 1/2 months so we decided to pay for a private referral initially which meant DS got on medication sooner.

Time is the only thing that will resolve it but the meds and various other things can reduce symptoms and make it more manageable. This is what we did...you've probably tried lots of these already though.

• fed upright, no lying down for half an hour or so post feed
• cot wedge so DS slept at an angle
• comfort milk (we used aptamil and they now do a reflux one)
• infant gaviscon (this made DS constipated the whole time he was on it so we used to give him cooled boiled water between feeds)
• ranitidine and domperidone - deffo helped us but took maybe 2 weeks to start seeing effects. But he was like a different baby on them.
• dummy seemed to comfort DS too

We were advised to start weaning early at about 5 months but it was only on doctors advice. Things did improve once he was sitting up more, then moving about, then eating solids. But I well remember at your stage that all felt such a long way away. He's 11mo now and we've just stopped his meds to see if things have improved. So far, 3 weeks in, he seems totally normal so they do outgrow it eventually. But it's hellish and so little understood by the typical GP.

Worth remembering you need to get your dosages checked to increase in line with your baby's weight going up. Deffo push for a specialist appointment and hang in there to see if the meds take effect.