At end of my tether with reflux :(

[poppetpenguin]

Baby is 7 weeks and has been diagnosed with reflux and CMPA, needs to be held pretty much constantly and still vomits everywhere. Gaining weight OK and during the day when being held or in sling is quite settled and ok... but at night!
We have her sleeping on an incline to try and help, but she cannot be put down without crying within 5 minutes. I am obviously posting this at 4am after a night of repeatedly trying to put her down (it's a next to me so I can put my arm/head in to comfort her but this doesn't help much)
I've been breaking my heart listening to the gulp,gulp sound of it coming up in her throat and her groaning and starting to cry and thrash again. Then she will turn her head and vomit, even two and a half hours after a feed and on an incline.

She is ff and on a milk free formula, had gaviscon but the constipation caused even more upset.

Should I be pushing the GP for something else or is this just life now? I'm absolutely beyond exhausted and feel so sorry for her having to be so uncomfortable.
Any advice would be really welcome as I'm just crying and exhausted all night!

Sending hugs from someone in the same boat xxx

My friends daughter had it and it was terrible, my friend was dogged about getting to see a specialist and only then was it treated properly and needed reviewing for a good year with medication doses as she grew. The stuff the go is giving isn't working, you're going to have to fight I'm afraid.

I hope that you're ok too. A new baby is hard enough.

My daughter has it and is still medicated at 3 however it's controlled. When she was a baby we had the same issues. It took almost a year to get the help we needed. However what helped was ranitidine medicine and omeprazole and aptimel pepti for the CPMA. I spent time in A&E and basically refused to leave without a prescription (you might not want to do that in these times) but also eventually found a sympathetic gp. Wishing you the best of luck it's heartbreaking. xx

Oh Boy.......... Reflux and GERD is awful.

I had bronchitis about two years ago. I don't smoke so I just thought it was a bad cough. It got worse and worse until I was coughing all the time and started coughing up blood. It forced it's way up and I could not control it so I saw the doctor twice. I was prescribed meds but they didn't help.
Eventually I saw a different doctor who got me on the right meds, but the cough left me with stress incontinence and reflux and GERD.

I suffer a lot with this. The incontinence has dissipated somewhat but the reflux........ I hate it. Last week I was sick for two hours solid. I was looking after my grandson and he had to be taken home so he would not be upset.

I feel for anyone who has this condition. I can't imagine what it's like for babies and their mums, and would not wish it on my worst enemy

you're going to have to fight I'm afraid.

It’s a sad state of affairs when you have to “fight” your GP to get help for a baby isn’t it? Why can’t these doctors be more helpful?

Hope things improve for you soon OP.

I feel for you my first was like this. Gaviscon is pretty crap with reflux but my GP said you have you try it as it's the first step. Go back to the GP and get ranitidine, it really helps.

I'm sure you're doing all the other things like keeping her upright for a good 20 mins after a feed? I also found she hated being patted too much to get wind up, so just try be gentle if you can.

If gaviscon helped you can get laxatives to combat the constipation.
Carobel is an alternative milk thickener.
Ranitidine, omeprazole and erythromycin are all different things that could help.
Neocate formula is good for babies with allergies.

My baby has silent reflux and gaviscon was useless. A locum GP prescribed carobel- a thickener that doesnt cause constipation. It suits him really well and really really helped. Definitely worth asking for in my experience. Ranitidine has been discontinued I believe- the alternative is omeprazole. We had a terrible time with it but have since been told it makes it worse before it gets better so maybe we should have persevered.

Gaviscon just constipated my baby too. Luckily I have a lovely GP who took it up a notch and prescribed omeprozole (over the phone due to virus) without too much hassle so I definitely think you need to insist gaviscon not working.

You have all my sympathy, DS was like this and it was awful. We were lucky though as he grew out of it by 6 months, Gaviscon was useless but the one thing that helped was Colief which breaks down the enzymes in the milk so it's easier to digest. It's expensive though so try to get your GP to prescribe it, and you may need to be a complete pain in the doctors arse until you find what works for your baby but don't give up!

My baby was exactly like this. It's horrible and you have all my sympathy.
I just wanted to say please look at the evidence behind some recommendations. If you would like to give colief a go for example that's up to you but as there's no evidence it works it's won't be prescribed by your GP. That would just be a pointless battle when you have enough on your plate. Hope you and your little one have one of the good days today

My dd was exactly like this. Gaviscon did nothing. We were referred to paediatrician as GP wouldn't prescribe anything else. She was prescribed ranitidine and it was like an instant relief.

My GP referred to paediatrician at 6 week check and we got Lansoprazole. Ask for a referral and don't take no for an answer. Gaviscon did work for us in the very early weeks and the constipation can be treated.

My twins had this, i was tearing my hair out it was awful. Eventually they grew out of it at 6 months but you have my sympathies. We never managed to find a successful treatment for it, the GP just didn't want to know.

CMPA mum too. It’s awful! DS is now 16 weeks.

Allergy milks are really thin so you will likely need a thickener. Gaviscon is known for the constipation I’m afraid, and we found treating that plus laxatives was a horrible mix for DS. Carobel thickens and can be gotten over the counter and causes less digestive issues for most. If we don’t use a thickener then DS aspirates on his reflux

You could ask for omeprazole (ranitidine is not being prescribed atm by many) or lansoprazole. They don’t stop the reflux, so you will still hear it and get the vomit, they just stop it burning as it comes up.

Which allergy milk are you on? If I’m hydrolysed you could ask for an amino acid one. We are now on neocate, but his reflux is better than on the hydrolysed milks. Now he has carobel in it he’s a happy puker so we don’t need to give omeprazole (and when stopping discovered it was making him worse anyway!).

We actually found a wedge was better than inclined cot. He now sleeps on his side and can lie flat since about 12 weeks when we started the neocate.

Do you have a dietitian? If not, request to be referred as ours has been a lifesaver. GP were reluctant to do anything until I put pressure on them (we came home 2 days before lockdown and DS screamed for the first 8 weeks of my life ... but GP assured me babies cry... complaint about said GP has since gone in!!!)

Sending hugs OP x

Thank you all - got teary reading replies as it's a relief to hear from others that have been through it.
I'm going to go back to the GP and ask about medication. I'm very nervous so pushing is not in my nature but I'm going to do my best!
I've also ordered some carobel to try as she is on amino acid milk and it is very thin so maybe that accounts for the frequency and quantity of puke!

My ds was the same. A combination of Neocate with carobel and ranitidine made it bearable. It didn’t stop the vomiting, but it eased his discomfort so life was just messy.
You have my sympathy, a reflux baby is bloody hard work.x

which amino acid milk is it? my DS had CMPA and was also allergic to coconut so neocate was still a problem. we ended up on alfamino.

hand hold OP - I have been there too. I promise it gets better!

You are not alone
It will improve, honestly, but it won't be an overnight fix.
Loads of good advice upthread about what to pursue next, but I would say this:
You must get someone to share the load on this. As your daughter is FF, her father, or a relative or even (if funds allow) a night nurse.
You MUST get enough rest too (I went to bed at 7 to sleep before dd woke for feeding). That is the key to survival. All that guff about sleeping when your baby sleeps- do it! Forget everything else.

It's awful isn't it. My ds had this and grew out of it completely by 18 months but the early days were very hard. Gaviscon didnt help at all, just made his sick lumpy. Thickened milk, omeprazole and something beginning with an L really helped. Ranitidine helped a bit but then was changed for the thing beginning with am L but I can't remember what it was called. This was prescribed by a specialist rather than gp. We had to change Gp to get help though. First gp and health visiting weren't interested and kept telling us it was normal even though DS was failing to thrive. We changed Gp and not long after DS had streaks of blood in his vomit caused by constantly throwing up for 5 months.

I haven’t read the thread but DS had absolutely awful reflux, we couldn’t put him down at all, he had to be help upright. I was at the GP twice a week and the only thing that worked for him was omeprezole and an anti reflux formula, and he needed lactulose a couple of times a week to ease his constipation. He changed into a different baby within a day and we were able to put him down for his daytime sleep and then his night time sleep. He was about 10/12 weeks when we got it all rectified.
To get though it we had to take shifts holding baby. I would go to bed 7pm-11pm and then DH slept 11pm to 4.30am and then i slept another hour before he went to work. We did one night each on a weekend.
We survived!
At 4.5 months he was sleeping through 6.30-6 so there is light at the end of the tunnel!

Also my DS didn’t have a cow’s milk allergy thankfully. I agree with a pp we also took DS to A&E one night because no one was doing anything. They just say it’s colic! We did eventually get to a sympathetic GP and then thankfully managed to get an Unscheduled appointment with his paediatrician (he was prem) so we didn’t have to wait for a referral and he sorted it.

Aptamil comfort saved us.

Aptamil comfort isn't going to be any good for a baby with CMPA @Yorkiee

Ops ://