Reflux & CMPA HELP - baby still sick!!

[LadyH1986]

Hello hoping someone may be able to advise...

DD now 23 weeks, on SMA Althera for suspected CMPA, and 5mg daily omeprazole for reflux.

Whilst the omeprazole has helped to a degree (she no longer screams during a feed...) SOMETHING is still making her regurgitate a lot. I should also add that I think she’s more sick now on althera but doesn’t make sense to me. I use carobel to thicken....

Up until about 3 months she rarely regurgitated at all (apart from a couple of weeks as a newborn)

We were late diagnosed with CMPA and reflux medication, which also led to a feeding aversion which were still recovering from. She now will have 3-4oz every 3 hours, and whilst gaining weight - is on the 2-9th percentile.

We’ve been working alongside a peadiatrician, but before I go back AGAIN, I wondered if anyone had similar experience and can help me reduce her sick!

Just to share my own experience; my CMPA baby started regurgitating once she was put on hydrolysed formula at 9 weeks, I'm certain it was what aggravated it as despite many symptoms of CMPA she had never been sick prior. She continued to regurgitate daily until she was about 11 months old although it massively reduced once she was weaned. In our case as she was finally gaining weight and not distressed from it, our GP recommended not medicating her further. I would recommend feeding baby in stages if she will tolerate it, 1-2 oz, short break and wind, next 1-2 oz. Also not lying baby flat for 30 mins after feed to reduce amount brought up, I used to carry DD in a sling. I hope you are doing OK, it's so hard with an allergy baby xx

Thank you so much. It’s so nice to hear other experiences as feels very lonely at times - like yours is the only baby this uncomfortable etc. Hate that I can’t help...

X

Also - she is regurgitating at random intervals, not always straight after feeds. She regurgitates when burped almost every time ... but will often happen randomly between feeds (after she’s been kept still for 30 mins )

Doesn’t make sense!

As far as I'm aware, Althera still contained cows milk proteins but in a very broken down form, hence why some CMPA babies still react to it.
My twins were started on this but it made hardly any difference.

We were then put into SMA Alfamino (after much pushing from my end to our GP!) which is an amino acid formula, so completely dairy-free. This worked wonders for us! Definitely decreased the CMPA symptoms and spit ups. It's very watery so some use a thickener like Carobel to thicken it up to help with lessening reflux and spit ups.

We did also have Omeprazole prescribed for a while but I wasn't convinced it did much, so we stopped it after a while. I'd definitely ask about Alfamino or another amino acid formula, I think Neocate is another popular one!

Thank you! Can I ask what symptoms they had? We don’t have any rashes etc so part of me worried it’s not a mega allergy, but something is causing the reflux and several outfit changes a day for all

The completely DF formulas are more expensive so you might come across a reluctance to prescribe. I think it's worth pushing the issue.

Just been doing bedtime and it’s torture. She screams throughout, constantly squirming and crunching her tummy. And on top of it all she’s teething: it’s actual hell at the moment - I can’t believe I’m saying it out loud - but it’s breaking me. So fed up of people saying it’s normal... problem is now teething is in the mix, it’s so hard to pinpoint whether it’s that, overtiredness or the food

Really feel for you. I have CMPA and if I ever have dairy it's agony and it makes me really miserable.

Is there anyway that you, or someone else, can film a feed so the Doctor can see how much pain she's in?

We’ve already done that - several times. That prompted the omeprazole and the suspected CMPA... but since changing onto both formula and meds, she’s regurgitating more than ever!!

Althera is an extensively hydrolysed formula. Banies with CMPA may temporarily improve when transferred onto this but in lots of cases it is not enough as there is enough recognisabke protein chain fir the body still to recognise and react to.
You need to change your baby onto an amnio acid acid formula as the body cannot recognise the protein molelues as cows milk proteins. The SMA version is Alfamino. I personally think Nutramigen Puramino is excellent but both should work.

A knowledgable paediatriacian should be aware of this prescribing route. I would recommend you ask yo be referred yo your local prescribing dietician if you have one. They are experts in child dietary allergies and prescribe suitable formulas accordingly (they are in prescription until age 1). It is recommended you get referred to your local paeds hospital dietician in the long term run as you will need help with weaning and stepping back in to dairy via trials with the food ladder etc. You will need help for this.

Mine didn't improve until changed to amino acid formula

As an aside, dont be tempted to switch to soya or similar believing dairy free to be a solution. Protein chains in soya and ither mamalian milks like goat are all very similar. A significant number of people allergic to mamalianmilks are alsi allergic to soya.
Amino acid milks are not dairy free. They are made from milk, the structure of the protein in the milk is broken down to such an extent the body cant recognise it. You need this route. Good luck.

A significant number of people allergic to mamalianmilks are alsi allergic to soya. I think it's about 50% isn't it Glam? I know I'm allergic to both.

Amino acid milks are not dairy free. They are made from milk, the structure of the protein in the milk is broken down to such an extent the body cant recognise it. I didn't know that, thank you.

Is there soya in that formula as well?DD started on nutramigen but then moved to neocate because of the soya. She is mainly breast fed.
Her reflux didn’t actually stop but it wasn’t distressing her. It’s the valve that’s faulty on dd’s stomach. It has only just started working properly now she is 7 months old, although solids maybe helping keep the food down.

Was she showing other signs of discomfort when not regurgitating? DD wriggles constantly and getting a bedtime bottle down her is particularly challenging. She doesn’t seem in pain when regurgitating but feeding still isn’t a breeze here: I think AA formula should be my next port of call: thanks everyone x

How often is the omeprazole dose being reviewed? From my experience, 5ml sounds at the lower end, DD was on about 7 by that age, although 25th centile, so probably heavier. Our GP was very clear though that if it continued to not work too well, it could be increased by quite a bit.

It hasn’t been reviewed at all. Our GP has been useless... I’ll call them tomorrow. That only helps with the pain of the acid and doesn’t actually treat the reflux, does it? Is yours on hydrolysed formula, too?

No, she's breastfed. I miss cheese 😭

Yes, I think that's how it works. So it might not help with the sick, but would hopefully help with the crying and squirming. The dose is dependant on weight, so has been reviewed every month or so (although less now as weight gain has slowed). I'd definitely say get it reviewed, we've found it's fairly quickly gone from working to not working when she's put a bit of weight on.

Oh - and we had the dose temporarily increased when she was teething badly, and took it back down again when things settled.

Your GP is able to prescripe and amini acid formila if an EHF has not worked. Push for this in a two week trial, which is standard. Demand to be referred to your prescribing dietician or similar allergy support dirticuan for confirmation and support.
Your Gp will have access to uo the CCG CMPA prescribinb route. Get them to look it up.

You are unlikely to need omeperazole once the allergy is resolved.

Thank you. I ordered some myself to give it a go and then see. So we think the squirming and pulling legs up etc is all related to milk still? Even though she doesn’t have any rashes etc

Even though she doesn’t have any rashes etc.

I've never had a rash with CMPA.

Sometimes you need a thickener for reflux like carobel to help keep the milk down

The squirming, leg crunching, discomfort, uncontrollable crying, vomiting, and or diarrhoea are all signs of CMPA. A rash doesn't have to exist.
Ifyour child slightl improvexd on an ehf milk then got worse its very likely to be an allergy. The true test is changing yo an amino acid formula then changing back after 2 weeks (no sane person would!) Once uou switch youll know within a day or two. You might have to switch over formula by mixing it half and half with your original milk to start with depending in how palatable your baby finds it. You should no longer need a thickener. Wishing you luck.

Thanks. Prescription taking ages (always happens here...) but hopefully in a couple of days. Will I not need a thickener with Neocate... as isn’t it horrible and thin like the others? Or more so that if the allergy is corrected, then she shouldn’t be as sick? Xx

Hi OP - no advice unfortunately but I hope you sort soon, sounds miserable. Do you mind if I ask what the basis was for the CMPA diagnosis? Interested as you mention late diagnosis and no rash. DD screams for many (but not all) feeds and has incredibly watery poo with lots of wind plus sicking up but no rash, wheezing etc. GP just said it's cos she needs solids so to get on with weaning her but I don't see how that could cause these symptoms so am interested to hear about late/non-typical diagnoses of CMPA in case it is that