Whats the next step - Baby with Cows milk allergy and Reflux

[Danielp87]

Daughter is coming up to 3 months, she is currently on SMA Alfamino for cows milk allergy, and also Omeprazole for silent reflux. We have had various formula's and also Gaviscon which didn't work. I think she is currently teething as shes constantly trying to put her hands to mouth. We have never had a decent night sleep with her, she cat naps for 30-50 mins at a time and she is grizzly in her cot when she's put in it. This week she has started to reject feeds, keeps arching back and generally been a nightmare. She gets really painful wind and cries in agony.

Is there anything else i can get the doctors to do or try, I feel she needs to see a specialist.

My partner is on maternity and she's having such a horrible time with her and its really affecting her. She was due to go back part time next month but its impossible. Just reaching out for advice. Thanks.

How long has your daughter been on this milk?

There are a range of milks available for CMPA babies but they are different qualities in term of how broken down the proteins are that the babies are allergic to.

It is my understanding that some allergy milks still have the cow’s milk protein in them but they are slightly broken down (for babies whose allergy isn’t quite as severe) whereas in other brands, the protein is broken down much more (hydrolysed) for the babies who are really sensitive to it

Most GPS will start off with the milk where the protein is the least hydrolysed, as it’s cheaper, and if babies still seem to be struggling with the milk they the GP then moves on to a more hydrolysed version.

I don’t know where SMA Alfamino fits into this spectrum, but I know that Brands called Neocate and Aptamil Pepti are more hydrolysed versions.

It may be worth asking the GP to try another milk?

Has your daughter been referred to a dietician?

One of my babies was CMPA and it really is hell until it’s gets under control.

I dont have much advice as i am in the exact same position, my little boy is 13 weeks and on Aptamil Pepti but no improvement yet after a week and gaviscon for silent reflix just made him constipated. Going to do the 4 week trial and see how it goes.

Also have had a horrendous maternity as he is always crying/unsettled and isnt happy ever really. It really does take a toll mentally but make sure you both get time away from being mum and dad to breath and reset, its so so exhausting.

Just wanted to let you and your partner know you arent alone, and keep going back to the doctors until something gives as i dont believe in 'colic' there has to be a cause and we cant leave our babies in pain!

Just wanted to drop in and tell you that things do get better. Our little girl was exactly the same and falling through her centiles (99th to 20th).

As far as I'm aware, SMA Alfamino is fully hydrolised so all the milk proteins are properly broken down, but there are other things in the formula that she might be reacting to. How long has she been on it for? If over 4 weeks, it's definitely worth going back and raising the issue.

Our baby was on Nutramigen for 4 weeks before her symptoms started to calm down, but we had 2 months of bottle refusing, barely eating, crying, reflux, etc before she accepted her fate, started taking the milk properly and gaining weight consistently.

It is hell. The stress that it puts on you as parents is horrendous. I promise though, it gets better. Our little girl is just over 4 months now, the reflux and projectile vomiting has gone and life with a newborn is much more enjoyable. I can't help you with the sleep though - she still wakes up for a feed at least twice a night!

I’m really sorry you’re all going through this. I know it’s absolute hell. I have come very close to having a breakdown multiple times over my baby’s feeding and as much as I adore him, I didn’t enjoy a single day of my maternity leave (I’m back at work now).
my 6 month old has confirmed cmpa and is on neocate but we tried everything and I mean everything to help him with his digestive issues. Gaviscon, omeprazole, carobel, 5 different bottle brands, different flow teats, different feeding techniques, Nutramigen, Puramino and now like I said neocate.
He was and to some small extent still is a VERY windy baby. He would scream and scream with wind and tummy pain which made him swallow more air and we’d end up in this vicious cycle. Absolute torture.
In terms of formula, you are already on an amino acid formula. Even though they’re supposed to be the most benign thing ever some babies still react to things in one aa formula and not another like soy in puramino for instance. I think Alfamino is soy free so that shouldn’t be an issue but if you feel it’s not helping it may be worth trying a switch to neocate. I felt like Puramino, although much much better than Nutramigen wasn’t quite right and they switched us to Neocate and after a few weeks of him getting used to it, he has very little tummy discomfort.
We were also told by the Infant Feeding Team at Alder Hey, omeprazole causes tummy discomfort and wind, especially the higher the dose. What dose is she on? So that may be something you need to look at. It’s a fine balance between helping reflux pain and not causing more issues and unfortunately it’s never quite perfect. We decided in the end it wasn’t helping in the way it should and he actually started clamping his mouth shit and spitting it out at 5 months so we cut it out all together.
As hard as it is, I would say try to relax about her refusing the bottle. I stressed so much, we came very close to him getting a bottle aversion because I pushed so much thinking he never drinks enough (which he still doesn’t really). If she doesn’t feed, be confident she will when she’s hungry. Offer once more after say 10-15 mins and if she still refuses, end that feed and try again next time. Do your best to stay positive in front of her during feeding. Take turns as I know it takes it toll on you emotionally.
Unfortunately the biggest help for us was time. Like I said we tried everything and nothing ever really solved things completely only him getting older. It’s incredibly difficult getting through each day and I know it must seem like things will never improve but they will. I know 6,7,8 etc months seems so far away but you will get through it.
Our little boy still doesn’t drink much milk (4-5 ounces at best per feed), still sicks up loads but isn’t in pain and magically keeps putting on weight (pretty sure he gets his nutrients from the anxiety and stress he gives me 😂) and over the past few weeks in particular has become a much happier baby and he absolutely loves food which is a relief.
I’d also say you can never tell if it’s teething. I’ve had paediatricians swear mine must be teething he has his hands and everything he can get his hands on, in his mouth ALL THE TIME and not a single tooth. Babies just go through an oral phase.
Are you being referred to a dietitian? Have you had to do a milk challenge? Are there any Infant Feeding Teams where you live? Having professionals who specialise in these things helps massively, even if it’s just to talk through your concerns.

Oh also did your wife or your baby have antibiotics during or after birth? There’s research going on to say that there may be a link with antibiotics given to the mum during labour (which I had) as well as baby having antibiotics after birth and cows milk allergy as it wipes out all the good bacteria in the baby’s intestines. So a lot of people (I’m looking into it now) give their baby probiotics drops (think BioGaia have good reviews) to help with this and have seen massive improvements with wind and less pain. Might be worth a go too.

You need to ask for neocate. It's an amino acid based formula with no milk in whatsoever. CMPA is hard. My little one didn't fully get over it until I stopped breastfeeding and moved to neocate. It took about a week to see a huge improvement in her, including sleeping for more than one hour at a time.