Advice of reflux and CMPA 7 week old

[B3ckOxo]

Looking for advice / similar experiences – 7-week-old baby boy ❤️
I’m hoping to hear from other mums who have experienced anything similar with their little ones, because I’m honestly at a loss with what’s going on with my little boy, Jax.
Since birth, Jax has struggled with what seems to be ongoing digestive and feeding issues.
We’ve had problems with:

• Severe reflux: He brings milk back up after most feeds, sometimes quite forcefully, and seems to suffer with silent reflux too.
• Tummy discomfort: Lots of wind, straining, kicking his legs, pulling them up towards his tummy, arching his back and crying as though he’s in pain.
• Stools: His nappies have been all over the place, from watery and loose to mustard-like and mushy. We’ve had periods of constipation too.
• Congestion and mucus: He’s had episodes of milk coming out of his nose, coughing and sounding congested.
• Possible milk allergy: CMPA has been mentioned by doctors, which has led to 3 formula changes.
• Feeding difficulties: He generally takes around 4oz every 2–3 hours, but doesn’t always seem comfortable during or after feeds.

We’ve tried Cow & Gate, SMA Althéra and Neocate. We’ve also tried omeprazole and Gaviscon for his reflux, with varying results. We’re currently on day 20 of SMA Althéra. Some things have improved, but we’re still struggling with reflux and his general comfort. Another big concern is his weight. He’s been dropping across his centile lines, and although the health visitor isn’t overly concerned at the moment, they want to monitor his weight closely. His doctor has now suggested trying Nutramigen. He’s also been diagnosed with a tongue tie which was assessed and advised not to do procedure and laryngomalacia (floppy voice box). I feel like we’re constantly changing things, trying different treatments and still not getting to the bottom of why he’s so uncomfortable. I’d really love to hear from anyone whose baby has experienced:

1. Reflux alongside suspected CMPA.
2. Poor weight gain despite taking regular bottles.
3. Ongoing tummy discomfort and abnormal nappies.
4. Multiple formula changes before finding one that worked.
5. Laryngomalacia alongside feeding and reflux problems.

Did Nutramigen make a difference? How long did it take to notice improvements? Did your baby’s weight gain improve once their reflux was under control? I’m not looking for a diagnosis, just some real-life experiences from mums who’ve been through something similar. He’s only 7 weeks old, and I just want him to be comfortable, feed happily and start gaining weight properly. It’s heartbreaking watching him struggle when you feel like you’re trying absolutely everything. ❤️

Just bumping this for you, OP, in case anyone's around to give you some advice and support.

Bump x

How bad is your ds’s tongue-tie as a lot of the problems your ds is having can be caused by that?

My ds has just been diagnosed with tongue-tie, and when he was a baby he had reflux, wind, tummy problems, took around a hour to finish a bottle, and was very slow at gaining weight. At the time his tongue-tie was missed, and I was advised to thicken his formula and move him to solids earlier than normal by his GP. Neither of which really helped.

His tongue tie was reddened and graded 10/14 overall, the only thing that he does it looses latch catching his breath (he’s a floppy voice box)

It sounds like laryngomalacia is the root cause of all the issues which makes sense as it is a cause of significant, persistent reflux. The most effective treatment for laryngomalcia related reflux is thickened feeds but it’s still not perfect. The milk progression is odd treatment of CMPA as it’s usually extensively hydrolysed formula followed by a trial of amino acid based formula eg neocate or Alfamino.

It really sounds like they need a review of CMPA and dietician referral
an ENT referral for laryngomacia, A SALT referral to review swallow and positioning and a decent bottle feeding assessment to look at feeding as position changes and pacing can be really supportive in reducing the reflux.
Signficant laryngomalcia is a contraindication to tongue tie division but ENT can assess this. It may be a good oral assessment may identify other issues like a sensitive gag that are contributing to reflux.

Firstly, I’m really sorry to hear how much little Jax is struggling. It must be incredibly upsetting, especially when you’ve tried so many different things already.

I’m a UK-registered osteopath and we see babies with feeding-related concerns, although reflux, allergies and poor weight gain often benefit from a medical assessment.

You mentioned a combination of reflux and laryngomalacia, feeding discomfort and dropping weight centiles. Laryngomalacia can sometimes contribute to feeding and swallowing difficulties, so I would encourage you to ask your GP or paediatrician whether a specialist feeding and swallowing assessment would be appropriate.

CMPA may also be contributing, but changing formulas repeatedly can make it difficult to establish what’s helping. It’s worth discussing a structured plan with your paediatrician rather than continuing to switch without clear guidance.

Given the weight concerns, I’d push for a prompt paediatric review rather than waiting to see whether the latest formula works.

I really hope you get some answers soon, you’re clearly doing everything you can for him.

I would try using a latex teat rather than silicone. They are softer and easier to control. Make sure you are keeping them upright as possible when feeding and afterwards. We used a baby swing.

Just commenting to follow everyone else’s response and hopefully any ideas I haven’t already tried, I have a 6 week old with reflux and ?CMPA, we’re just starting on a new milk & Omeprazole but don’t seem to be having much luck so far. No-one seems to be bothered as long as he isn’t losing weight!

As an IBCLC (we support bottle fed as well as breastfed babies), I wonder if anyone has watched a full feed & suggested changes to:

Positioning & latch: elevated side lying with chin support can help ++

Teat: teat shape can impact latch ++ Tommy Tippee/MAM both encourage v shallow front of tongue latch which can often lead to ++ use of lips to keep the latch - wedge shaped teats Help a deeper/more effective latch (look at shape of Lansinoh/NUK perfect match/the new Tommy tippee style as examples - Morrisons nutmeg range also use to do same) & some are interchangeable with different brands bottles so might only need to change the teat.

Flow/volume: go for the slowest flow tolerated & remember there’s no need to change to faster flows (they exist to try & keep you hooked/buying more) nipple ducts don’t get bigger/flow faster & even if baby is on a slow flow teat they can still progress to free flow cups!

May find with all of these tweaks that baby takes smaller feeds more frequently (?1-2 extra feeds a day), this can take pressure off the tummy/valve at top of tummy & reduce wind/vomiting - let them show you how much they want & don’t push them to finish bottles.

Would suggest a full TT assessment - without knowing what assessment tool was being used, 10/14 doesn’t mean much to me (when I use the ATLFF & detail what function/appearance feature scored what as well as the overall score & what that means.
I wonder if it only looked at appearance rather than tongue function.

it’s completely possible to have a tt & laryngomalacia - but working first on tongue tone/function is first priority as it could be that these are mimicking a tie.

Apologies for such a long post, but hope it’s helped - can use the LCGB website to find an IBCLC local to you - many of us offer feeding drop-ins/ways to see us for a chat as well as private 1-2-1 appts (which obv give chance to go through everything above + more tailored to you & your babies concerns/needs).