Silent Reflux - Sleep help!

[ASAMummy28]

My little girl has Silent Reflux and Milk Allergy as diagnosed by consultant at hospital. After reading the threads on here, it's all the usual (endless screaming/crying, constant chocking,wants to be upright all the time,struggles to feed, sleeps only in short bursts, and cries when burping). She's on ranitidine now after initial nightmare of Gaviscon making her worse, plus constipation. But since birth we havnt been able to sleep anywhere but on me. She had problems initially chocking on fluid after birth, which then never seemed to stop as she started with silent reflux. I'm breast feeding her and thankfully we've not had any issues with her gaining weight. She's now 3 months old, and we have tried everything, from propping up the top of a basket/cot, putting a water bottle in first, waiting till
She falls asleep then putting her down (or onto someone else), driving in the car (absolute nightmare, she screams like mad as soon as in the car seat) but no matter what we try her eyes pop open straight away and she cries. I'm completely exhausted now, and at the point where I can't keep trying to put her down as I need to get what sleep I can when she's asleep on me (as safely as possible of course). I just wondered if any other mums of silent reflux babies have got into the same problem of sleep? I don't know how I could of done things differently as she would choke and scream in pain if I put her down, but in my sleep deprived state I really don't know what to try next to help her sleep but not on me! Any advice would be very welcome

[EveryoneTalkAboutPopMusic]

You have my sympathy as my DS would on,y sleep on me and cried constantly. If you are Bfing, have you eliminated all dairy from your diet? When are you next due to see the Paed?

[EveryoneTalkAboutPopMusic]

Oh and a swinging seat really helped us

[ASAMummy28]

Hey, thanks. Yes, I've cut out all dairy for 6/7 weeks now. Apparently they can have Silent Reflux and Milk Allergy, rather than the reflux being because of the allergy. It's cleared up her eczema and constipation problems since I stopped having dairy, so worth it for that, but has not changed the reflux. She's due back at hospital when she is 6 months, so not for another 3 months yet. They said I should keep her up right as much as possible, and not leave her to cry as she is likely in pain, and getting distressed triggers the reflux to flare up anyway. It's just tough when she generally sleeps in 45min bursts, or less. Not enough time for me to get to sleep too! We don't have a swing, would you recommend getting one? Can they go in them over 3 months old? Thanks for replying! Relief to know im not the only one with baby sleeping in them 😊

[EveryoneTalkAboutPopMusic]

3 months is a long wait at this age! Could you borrow a seat so that you can try LO in it before you buy?

Has anyone mentioned trying to cut out Soya too? Around 50% of people with CMPA also react to Soya as the protein molecules are so similar.

[ASAMummy28]

Unfortunately I don't know many other mums, so not sure who might have a swing to try, but will see if I can find anyone. I bought a more upright car seat, but because it's not completely upright, she still isn't happy. Yea, u read that about the soya so have cut that out too. I'm just desperate, so exhausted. Thanks for your advice, xxx

[EveryoneTalkAboutPopMusic]

Have you had a search of the MN archive? There will be lots of past threads on silent reflux

[Velocity]

I had the same experience of sleeping with a baby on my chest for months - it was crushing painful. Sling during the day and used this doomoo.com/products/seat/ which kept the baby upright and I even had him sleep in it overnight. He was a small baby though. It will get better .

[KCpip]

I could have written your post 3 years ago with our DD1. It’s so hard isn’t it?! I would definitely say get a swing chair. We ended up with a swing chair and bouncer and could get her to nap in one of them sometimes during the day. Movement is great for reflux babies and helps to keep them asleep. Do you use a sling? Obviously doesn’t help with the ‘not sleeping on you’ bit but may mean she’s more settled in general and might help her take naps not on you at another point of the day. If you’re at the 3 month mark you might start to notice a gradual improvement. We did with our DD. We were also advised to start weaning a little early at around 5 months instead of 6 and we did think solids started to help as it sits a little more heavily in their tummy. Although it can go the other way and just mean they’ve got a bigger variety of foods to distress them or sick up! Our DD really improved lots as time went by and it does go away but I do think it’s so hard to deal with and so exhausting. You have my sympathy. You’re doing the best you can so hang in there! Does the ranitidine help?

[ASAMummy28]

Thanks Velocity, we have a chair thing that sits at a similar angle to this (wish I'd seen these before though, so look comfortable!) but she just strains to sit up right in it. She just wants to be sat up. For any future readers of this, a friends also reccomend a 'babacush' they look good but for smaller/younger babies than my DD is now.

[ASAMummy28]

Thanks Kpip. I need to remind myself that it's not forever, it's just so hard when I'm so exhausted. Sorry to hear you've been through it too. I think the ranitidine does help over all, but she hates it and screams and throws it up. It's mint flavoured as that is ment to also help her tummy, but its not a natural flavour for her. You can hear it rumbling in her tummy if you get her to swollen it, which she seems to find painful. At times I feel like stopping it as it upsets her, but then I cant do that as it probably is helping. She had a few good days last week, then got really upset after a bath one night, just crying for 1 minuet triggered a flare in reflux that made her unhappy for a few days! I took her to gp on Saturday and asking to go back to the consultant. Even if I can just get some dairy and soya free formula (if it exists ) so someone else can take her so I can sleep. Even just for a few hours. Or even an hour. An hour would be amazing!

[ASAMummy28]

I thought I had cut out soya too, but rechecked and realised it was in all sorts of thing I hadn't realised! Feel terrible for not noticing, that it's even in bread and dark chocolate! But think it has helped abit more since I've not been having it.

[Mammoth62]

Hi, I don’t know if you will still be able to receive this message however I am going g through the exact same situation currently with my 3 month old and it has been horrendous, completely exhausted and feeling incredibly down and emotional.. just wanted to ask for an update on your little girl and at what stage she started improving? Need any kind of hope that this will come to an end soon!! Thank you

[Dugi3]

Hi, we were in the same position with silent reflux and CMPA, once the lansoprazole (similar to ranitidine) kicked in, which took around a month to be fully effective we found his sleep improved massively, we kept his next 2 me on a severe tilt but this is what kept him content. Also I second a swing, it was a lifesaver as he could be upright whilst the swing soothed him. But in reality time was the only healer, I HATED being told this at the time as it seemed forever away but he is 6 months now and sleeps so well! You will get there I promise!!!

[Mammoth62]

Thank you! Appreciate the response, he has started on omeprazole recently so hoping we will see some improvement soon!!! Fingers crossed!!!!