CMPA/Reflux - when will it get better!?

[TeainanIV]

Regular Mumsnet users will probably have seen my posts over the last few weeks regarding my tricky 2nd DD! Since she was about three weeks old her reflux has been awful, and just got worse and worse. She is now 8.5 weeks old and the reflux has reached a peak - and ended up in a trip to hospital over the weekend to rule out any potentially issues with her oesophagus. We are constantly covered in sick, she's not a happy baby and we get zero sleep as she cannot lie flat at all. It's been horrendous and we are at our wits end. BUT, I'm hoping there is light at the end of the tunnel as the doctor seems certain it's a dairy allergy and I've now cut dairy from my diet completely.

I'm not new to CMPA - my eldest daughter also had CMPA and an egg allergy (egg allergy only identified once weaning began at 6 months) and she has now pretty much grown out of both allergies (she's 3.5 years old). However, my DD2 has symptoms far more severe than my eldest ever did so I feel like it's all brand new again. Now that I've cut the dairy out of my system, how long do you think it will be until the reflux stops? Particularly the vomiting (which my eldest never really did, her symptoms were all gastro and silent reflux) - I can't cope much more with the endless changing of clothes and feeling like I constantly stink of baby sick!! It's awful!

I'm also praying that this will help her sleep and we'll finally be able to get her to do some stints in her next to me 🙏🏼 (just in time for the 4 month sleep regression knowing our luck!!)

Honestly cannot believe how challenging DD2 has been so far - everyone told me it's easier with your second!!

I really feel for you, that sounds so hard to deal with.

I haven't got any experience of a baby having CMPA but I can tell you from my point of view.

Started to feel a bit better after 24 hours. Much better again after 72 hours and completely different after 2 weeks. Hard to describe but felt sort of clean all inside and new.

TLDR: both me and my 1st child had the same as babies. Both undiagnosed for 4-6 months and both became very unwell and underweight but both instantly fine once given the correct non dairy formulas and no lasting effects.

Sorry this will be a lengthy reply-

I have the experience as the mum of a child who had severe reflux and cpma, and I was also a baby who had both those things myself.
I remember those many, many nights (months) of being absolutely covered in sick from our little one. We owned over 70 large muslin squares and we went through every one of those daily along with every towel and blanket we could find. Our washing machine was never off and we didn't have a tumble dryer so there was just a constant sea of sick cloths being used/washed over and over. For us things reached a peak around 4/5 months when I'd had enough. Nobody was listening to me as a then first time mum, we felt dismissed anytime we raised the matter with GP or HV etc and I'd developed PND through the experience. Our baby wasn't gaining weight at all by that point and remained at little over 7lbs- having been born at 6lbs.
One crucial night we had the projectile sick everywhere yet again, had run out of clean clothing for ourselves and baby and little one was still screaming the place down. It was gone midnight and we were at our limit. We had tried all the reflux advice and medications provided and they were doing nothing. I remembered I was raised on soya milk as a baby so DH drove out and found an all night supermarket that sold soya formula. We fed baby that for the next 12 hours and saw a difference so quickly!

However HV was horrified as babies aren't allowed soya under 1 yr old anymore which I didn't know But she did listen and we were fast tracked to an appt with a paediatric dietician at hospital who prescribed Neocate for our child. That formula was like a miracle!! Instant difference and the reflux basically vanished right away. My experience as a baby was almost identical according to my own mum. Again she wasn't believed and got ignored for months on end. It still pisses me off that despite 30+ years difference there was still a massive lack of awareness of milk allergies/intolerances. I sincerely hope you are listened to by your HV and my heart goes out to you. I promise it does get better and it sounds like you are doing everything you can for your baby too. It won't last forever but I know it feels like an eternity at the stage you're at.

In both me and my child's cases the symptoms reduced once we were on non dairy formula and in both cases dairy was okay once we were past the toddler years. Having said that I still have a slight intolerance to dairy as an adult but it is mild. Our child is now a teen and drinks milk like it's going out of fashion, no lasting effects at all.

Thank you for sharing your own experience, I'd say with my eldest it took about 3 weeks until we saw a difference. My second DD though has been so much worse than she ever was, and her symptoms have started a lot younger. Just can't believe how awful the reflux has been for her, praying this eases things!

Thank you so much for sharing your experiences, and that must have been so scary for you! My DD sounds very similar to your baby - the vomiting is unbelievable, I can't get over how many times we are changing her (and ourselves). We also had so many muslins from our firstborn and we never used to use half of them - with DD2 we're running out!! And, like yourselves, we also don't have a tumble dryer so it's constant washing and trying to get it all dried as fast as we can!! I can't cope with the state of our house at the moment but with a 3.5 year old and an 8 week old who can't ever lie flat and is miserable 24/7 my DH and I just can't keep on top of house jobs too!!

That's interesting that your mum said you were identical! I always wonder if I was dairy intolerant as a baby - my parents say I was miserable and never slept, just screamed all night. I've always been a little sensitive if I have too much dairy.

My eldest is the same now, although we're still giving her oat milk to drink as when she has cows milk as a drink she still has tummy pain and trouble. But she's fine with it in most things now thankfully! We thought we'd never get there!

I just can't believe how severe DD2s symptoms have been in comparison, it's been horrendous. Fingers crossed it turns around quickly now!

I think it took about 2-3 days for some initial mood/sleep improvement with my DS, but he is now nearly 20, so my memory may not be reliable. The awful nappies took a couple of weeks, as the gut lining has to repair. Vomiting continued until he was on solids, just less often than before, and we weaned early to help with it.
He grew out of his intolerance by about 2.5-3.

@Basketballhoop it's the vomiting that's the worst for my DD, although recently nappies have also gone downhill 😫. Fingers crossed we start seeing some improvements!!

What have you replaced dairy with and are they on any medication? My daughter has awful reflux and multiple food allergies. We need omperazole, domperidone and gaviscon to manage the reflux and to identify all 20 of her allergies! I'd start a food and symptom diary it took us a long time to see the wood for the trees but we then identified a few behavioural changes like being difficult to breastfeed and needing to be held which appeared before the reflux increased and the loose nappies started and that helped immensely
My sister projectile vomited every day from when she went on formula until 2 then continued to be frequently sick until the age of 40 when she went vegan. My mum saw a lot of similarities between her and my daughter.
My daughter is also allergic to soya, coconut and tomatoes (plus others). We identified soya before dairy but the coconut and tomatoes arose after we started to use them a lot more in cooking and df yoghurts to avoid dairy.

I feel for you. The vomiting did improve, just never completely eliminated until solids. We also never got given proper medication for the reflux.

I went back to work at 16 weeks because it was so awful constantly stinking of sour milk, never being able to put him down, interminable amounts of laundry. I also ended up with PND from it, and we only had a second child because of a contraceptive failure.

I am pretty sure, like others have said, that I was also dairy intolerant as a baby, judging by my mother's description of me.

I've replaced dairy with oat milk in my diet, she's been on infant gaviscon for a few weeks now but changes. They've told me they won't prescribe other medication yet as they want to see if things improve going dairy free first. After a few weeks I'll challenge the dairy and see if symptoms return. Hoping we'll have our answer soon!

Wow, 20 allergies sounds so tough - that must have been such a difficult journey for you! Hoping things are more manageable for you and your little one now. Can't imagine how tough that must have been

It's awful isn't it? I feel like I smell it all the time because it's so constant they even when she hasn't been sick on something it's like a phantom smell that permanently lingers! It's definitely had an impact on my mental health - plus the endless sleepless nights and constant hiccuping/vomiting/choking on the reflux it's neverending!! Hope your little one is much better now!

Have you removed soya, I would try that as well. They might ask you to do that next so you may as well get ahead of the game.
How long have you been dairy free? We saw a difference in a week although it was a long time before we got symptom free! The difference was so extreme in removing allergens that we were never asked to prove dairy and soya although I did challenge the other 18 often more than once just to convince myself!

It was hard, it was through COVID so not a lot of support aside from my brilliant HV. I developed pretty bad pnd as a result and had to spend some time in hospital as a result so do make sure you are taking care of your own wellbeing too x

She's 4 now still struggling with reflux but mostly controlled by medication and still reacts to the foods but we have adjusted it's just our normal now. Eating out is hard but most weeks its not something that impacts our lives!

Ha! He is nearly 20, at university and bringing me a whole different set of challenges. Thankfully his younger accidental sibling was an easy baby.

I’m just going to prepare you….

yes to the 50+ muslins.
muslins & the washing machine are now your life.

we did EVERYTHING with our cmpa baby.
on to pepti 1 then alfamino by 8weeks… we tried baby gaviscon (which causes constipation be careful!) lanzoprole(spelling?) and other stuff besides.

At 11m I’m still dealing with sick ups 5-6 times per day on a bad day.
It’s benign reflux apparently… 😑

I've only cut it out for two days so far so still very early days - with my eldest it took about two weeks before we saw a change so hoping it'll be similar this time. I've not cut soya as wanted to be sure it was dairy first, will definitely assess though after a couple of weeks and if things are still bad consider soya too

I really wish we had a tumble dryer, the amount of washing we now have is unbelievable! Yeah the baby gaviscon has done nothing to help her reflux and instead made her constipated! I'm very much hesitant to give her omeprazole as it made my eldest so much worse! At the moment just trialling dairy and hoping things improve, even if it's a little 🙈. So sorry to hear your little one is still struggling - it's so horrid. How are they sleep wise? I just want to be able to get my DD2 to lie flat in her bed for more than 5 minutes!

You are right to be cautious with omeprazole and lansoprazole
You are essentially looking at a trade off on weight gain & less vom now vs. potential gut issues when baby is older. I wpuld not have a baby on it if i could avoid it
My ds dropped to 4th centile at one point so i was up for anything. Sadly they did nothing for us so we gave up quite quickly.

Once on cmpa milk sleep improved radically buy i'll be honest DS still isnt a great sleeper ( the benchmark was high as his big sister lovessssss a sleep)

I suggest a heated airer if you can stretch to one or borrow one.

Things that help reduce the vom.

• tim.
• buy funky giraffe bibs - i bought about 20 in "good condition" on vinted for a tenner. Don't buy them new the price is crazy
• double up the funky giraffees with a square pop over bib underneath.
• triangle foam so the baby sleeps at an angle
• waterproof matress and then put padded cover and fitted sheet on top
• wean early. Lots of avocado.
• feed little and often.

Thanks for the tips! I haven't heard of funky giraffe bibs so will look in to those. Honestly I thought my first baby had prepared me for CMPA but it seems that DD2 is even worse!! DD1 was also an awful sleeper, but DD2 had already overtaken her on that front. It would seem DH and I only make fussy babies 😂!! There's no allergies in our family at all so it's really thrown us how we've ended up with two allergy babies!!

That's interesting you mention with weaning lots of avocado - I've not heard that before, is that just because of the high fat content? I did used to always use loads of avocado to bulk up my first born! You'd think she'd still enjoy it but she point blank refuses to eat it now - unless I blend it in a pasta sauce ( we call it hulk pasta 😂)

Yes definitely going to try and avoid the medication for as long as we can - really hoping things start to improve now I've cut the dairy 🙏🏼

*Edited to add question

Literally just for the calories. All the pouches seem to be about 30cals….😵‍💫 I use a lot of olive oil too. DS was on the formula which is truly vile so was also never good at drinking his milk / fussy.
DD would drain 240ml x 4 per day and we literally had to track his milk intake and push feeds on him.

We do nut butter mix to prevent nut sensitisation / more allergies

I moved him up to 60th centile - woo hoo but he has had gastro for the last 2 weeks and has lost 800g 😵‍💫😵‍💫😵‍💫

ultimately you’ve been through it before so you know you’ll get there…. Good luck!

Ok so still early days, hopefully you will see a difference in the coming days.

I went with both with the intention of testing them separately but I had a food diary that showed a clear relationship between her screaming and me eating soya.

It's one of those where you have to think about the least bad situation for you. is it harder to do 4 weeks of no dairy and then 4 weeks of no dairy and soya and find it was both or do 4 weeks of no dairy and soya test test soya and then dairy in week 5 and find it wasn't soya. For some it will be the former and other the latter.

I went through all the diet changes etc with my first child with no success, only to find it was just bad reflux. In the end it was controlled with Omeprazole until 9 months old, and it did improve slowly after they started solids but for a long time we were covered in muslins, and all the furniture in cheap ikea blankets.

My 2nd child has much more severe problems with reflux, but less vomiting. She is heavily medicated, without which its a nightmare for her. It's greatly improved when she doesn't have to sleep on her back though. Obviously, it's against general advice but she naps on her front during the day under close supervision. When she is well rested everything is a bit easier. Our neonatal pediatrician said if she was their child they'd have her sleeping on her front overnight too, with a breathing monitor attached. I can't bring myself to do that as I don't think I'll sleep for worry.

Sympathies!

It will get better. My 7yo is still IGE to milk and egg. We carry epi pens.
She now reads labels for herself (with adult oversight), remembers to ask questions every time she tries something new or is away from home. She confidently makes her own breakfast picking the right milk out of the fridge. She can tell me immediately if she's having a reaction so we can act fast with medication. We've not had an anaphylaxis episode.
She's happy, finally got a good appetite, full of energy. She is slender and I do worry still about her weight/growth (as she's also on daily steroid inhalers for asthma) but she's well and happy and thriving.
She also has a little sister who outgrew cmpa but carries epi pens for egg and peanut.
It's a hard road but it gets easier year by year.
You won't be carrying it alone forever.
Hang in there.

Ps: I had mine the other way round - the second child was much easier because she didn't react through breast milk. My first screamed and vomited a lot until about 9 months. It was very very hard. But we got there, and you're ahead of the curve as you will already be listened to by professionals when you tell them it's allergies

So sorry you are going through this, I went through the exact same with my son when he was a baby and understand how truly awful it is for everyone involved. I would also recommend going dairy and soya free if you are BF as i cut out all dairy, but turned out soya was also a problem. Have you been referred to a dietician?

A game changer for us and it was a holistic therapy so not everyone is on board with it, but a friend recommended a cranial massage by an Osteopath. I was thinking how is this relevant but was willing to try anything, anyway, this non-invasive treatment helps relieve tension from their bodies from pregnancy and labour including in / around their stomachs. It's very gentle touching around their bodies and i could not believe the difference. It didn;t solve the CMPA - that was only seeing the dietician and going onto a specialist formula, but it worked wonders for the reflux and colic. Would highly recommend.

Yes it does get better i promise!

Sorry, struggling to keep up with replies between my manic toddler and a very fussy baby! Thank you so much for everyone's advice - I massively appreciate it and it really helps to not feel alone in all of this. It was quite a challenging morning today, lots of sick and particularly quite mucousy. But I think that's because she is also coming down with a cold. The joys never end! But we have had a more positive afternoon, I've just come home from a breastfeeding drop in clinic near where I live and have been given some new breastfeeding positions to try to hopefully help with her reflux 🙏🏼

@TeainanIV I feed my daughter exclusively in a 'baby Buddha' position, sort of perched upright on me with legs tucked under, and then me leaning back a little. It does seem to help a lot. She won't feed in any other position because of the reflux.