Reflux/cmpa hell - does it get better?

[faline11]

Baby is 5 weeks old formula fed and doctor suspects CMPA so we are currently using similac. Some symptoms have improved but baby is still bringing up so much milk after feeds, despite following all the advice about holding upright afterwards. Still some symptoms like stuffy nose, very dry skin and terrible gas.

We can even be an hour or two after a feed and still not safe from a massive wave of regurgitated milk if we try and move or lay down.

Terrible prolonged farting episodes as well where LO will cry and strain and eventually pass a bit of wind and this will carry on for a couple of hours.

We have baby gaviscon which does seem to help but it caused constipation so badly we only give it for two late night feeds.

I'm just miserable and struggling to enjoy my gorgeous baby since we are both upset a lot of the time and I worry so much about weight gain. I spend all day just holding baby upright trying to keep the feed in.

Midwife and doctor said it improves at 3/4 months - this seems an eternity away and I'm so tired does it?

Would appreciate any advice or stories of people who've been through similar and come out the other side!

Hi there.

My LO had v bad cmpa and silent reflux. So not quite the same as we didn’t have vomiting but we did have a utterly miserable time at the start. I held him pretty much constantly and I remember hitting the 5 week mark and feeling totally beaten. It did get better - a lot better - I can’t pinpoint the exact time it got significantly better it was more a gradual improvement from around 12 weeks. Then, once he could sit and move around more he became so much happier. So each milestone helped. I worried a lot about weight gain. He’s 20 months now and for the most part a total delight - he eats, sleeps, talks and it’s amazing the different a year makes.

The first 3 months are so hard anyway so having added complications like this make it so exceptionally hard. The fourth trimester stuff still applies to reflux/cmpa babies. So keep that in mind too.

Things that helped us -

Finding time for myself (not easy I know but really really important)

Being VERY persistent with the doctor (i think I got a bit of a reputation but we eventually were referred to paeds who have been amazing at helping us with the allergy side of things). We also got a prescription for omeprazole which helped with the pain from reflux.

Realising that I was doing an amazing job (I probably didn’t realise this at the time but it was so exceptionally hard having a newborn experience with cmpa and reflux and I wasn’t honest with myself and other people about how hard I found it. I look back now and I feel so exceptionally proud of how I coped but I also wish I’d asked for a bit more help.

It WILL pass, I promise, we were all in a horrible place and I was so sad I couldn’t enjoy being a mother but I look at my LO now and it amazes me that we went through all of that (now I have new toddler things to contend with and I honestly think the difficult start has set me up for this better!)

Sending you lots of support because I’ve been there and it’s hard and you’re doing a fantastic job!

Oh - I forgot to add - our son was prescribed neonate which is a totally hydrolysed formula because he was so sensitive to cows milk protein (in the end he wouldn’t take it and I had to cut all milk products out of my diet because he only wanted to BF but that’s another story). So basically a different formula might be needed.

Sorry - neocate not neonate!

Thank you so much - good to hear a story where things get better! I have another appointment with the doctor so will ask about neocate as I think she is still reacting to the one she's on.

No problem. Glad you have another appointment. It would be good to also ask for a paediatric referral if you think it is CMPA because then you are in the system and can hopefully have proper testing when you baby is 6 months old. Some GPs are reluctant to refer patients because of waiting lists etc but it helped us immeasurably. My LO is still allergic to milk and he will be tested again when he is two to see if he has out grown it. If you can get on the waiting list now it will make weaning a bit easier etc. I was very forthright when I saw the GP and basically said I would come back everyday until a referral was made (obviously quite a hardline strategy to take!) but it finally made them listen and I’m so glad I did because I was exhausted and my baby cried constantly.

Take care 🙂

My baby doesn't have CMPA but does have reflux and it definitely has improved with age. I'd say 4-5 months was a turning point however, and I only say this to prepare you if your baby is the same, we seem to get flare ups during growth spurts. 6 & 9 months so far.

I’ve got a CMPA and reflux DS who is 14 weeks - spent the entire lockdown dealing with him with very little NHS support initially. CMPA babies are HARD. But once you find the right milk life gets 100 times better.

Initially tried similac and he was like a new baby for a couple of weeks but still reacting and then he went complete backwards. Changed to Althera and it was apparent within 24 hours that it made it 10x worse. Turns out we are ige which isn’t ideal 🙈 We are now on Neocate and it’s been a game changer for us.

The usual pathway is two hydrolysed milks (like similac) have to be tried before an amino acid one like neocate for 2 reasons. If baby can tolerate the broken down (but present) CMP chains then they may find it easier to follow a milk ladder and transition to dairy. But also comes down to cost. A tub of similac costs the NHS just under £10. A tub of neocate the same size costs just under £30.

DS is still pukey. The allergy milks are thin. If baby is gaining weight well the only options to help with the puke is gaviscon and carobel. We too hated gaviscon due to constipation. We also react to carobel (implies we will have a soya allergy) but you can buy it over the counter and see if it makes any difference to the reflux. Lots of cmpa babies do very well on it. If the reflux is causing LO pain then omeprazole or similar is available. DS isn’t in pain so we are just dealing with the puke as he’s a happy puker.

It’s taken a few weeks on the right milk before we saw breathing etc improve, but he was much happier from day 2/3 on this milk.

Agree with PP, you need to be persistent with GPs. I had to be quite firm in asking for a referral but having a dietician on board has made so much difference. One GP told me babies cry, it’s normal and asked how my MH was ... needless to say a complaint has gone in. I followed up when we were diagnosed ige to say just how dangerous that GP was!

Keeping a diary of feed times, amounts and symptoms has also been useful as then I had all the information needed to give to health professionals.

Bucket bath was a godsend with the wind/poo problems

Support wise - there is a page on FB called Main group - CMPA support which has been invaluable to us. So if you’re in FB do join!

In the thick of it, it is absolutely horrendous. But it does get easier. You’re doing a fab job ❤️

It is so, so hard. My baby improved slightly after 8 weeks and then noticeably happier at 4 months. From 6 months she's been a delight and off all medication.

She currently has a viral infection and looking after her is exhausting. I said to my husband this morning that this is what it was like for weeks on end when she was little. I had forgotten how hard it was, and it was less than a year ago.

Thank you - I will look into carobel and start keeping a diary!
Just good to know that it does get better and that other people have survived this, feels like we are in the thick of it right now and every day is so hard especially as I can't have any help while DH is at work long days!

Have you tried raising the head end of his cot (and anywhere he sleeps) - putting some books under the legs of the cot at head end. Not laying him flat on his back made a big difference to my son who was very similar (cmpa and projectile vomiting)