Suspected cows milk allergy and aptamil pepti

[user1492955376]

Hi all, hoping someone can help!

My little boy is 5 weeks old, we took him to the gp a couple of weeks ago with suspected silent reflux. He was being very wriggly during a feed, arching his back and generally looking uncomfortable and getting upset. He is incredibly difficult to wind and prefers sleeping at an angle on a reflux wedge. At times he will also cough and splutter during feeds although this could be due to the wriggling. He can also sound very nasal at times.

We were prescribed gaviscon which we thought helped a tad but last week we returned to the gp as it seemed the wriggling was more linked to his bowels. He is incredibly windy and will do 2-3 bowel movements around a feed- we counted 13 dirty nappies in 24 hours. He is so uncomfortable before passing wind or a bowel movement and he seems to use the feed to help him. We also noted some blood in his stools. The gp prescribed nutrimagen suspecting an allergy.

He point blank refused the nutrimagen even when trying to slowly introduce it with his aptamil formula. On returning to the gp we decided to try the aptamil pepti. He has nearly done a whole 24 hours on the pepti and whilst the blood in the nappy has gone he is still incredibly uncomfortable, windy and wriggly. We had one of our worst nights last night, he would settle on us but wake crying within ten minutes of being put down in his basket. He has also vomited twice which he has never done before. We are still giving gaviscon with the new formula.

I'm completely at a loss, I really thought a different formula would help but he's constantly upset and uncomfortable and I don't know what to do to help him. Im a first time mum but I'm sure this isn't normal behaviour.

I'm querying whether the thinner formula is causing him to take more wind or has aggravated his reflux. Or whether he needs a different formula again like the nutrimagen, as I'm aware the pepti formula still contains lactose. Any advice is very much appreciated!

Sarah

I bf a cmpa baby so not totally sure about ff but my understanding is that nutrimagin is only hydrolysed formula, it still contains milk protein in a slightly different form and many babies still react . Go back to the gp and ask for neocate which is completely dairy free

Before you change his milk again, its worth remembering that it can take at least a few days if not weeks for any iritation from a CMPA to settle in his gut, even on the right milk. Its a good sign that the blood has gone, are you keeping going with the gaviscon? You can use that along with any milk (as long as youre not using another kind of thickener). If hes still seeming sore then there are other medicines that can help with reflux that can reduce the acid in the tummy to keep them more comfy.

Personally i'd say keep going with the aptamil pepti for at least a week and use the gaviscon too. If things are getting worse then def speak to the gp again and ask for a referal to paediatrics. Its not the lactose in the milk that youre thinking about btw, its actually really rare for for babies to have an allergy to lactose. What these milk have that are different is that the cows milk protien bonds are broken down. Aptamil pelti is the first line one, its not cometely broken down but works for the majority of babies and tastes mkre like a normal milk. Nutramagin and neocate are more broken down but have a strong taste and it can be hard to get babies to take them (as you've discovered) so best to only use it if you really have to.

Hope he's better soon.

Huge sympathy as I remember this all all too clearly with my now 8 month old!

I would second the pp who said you need to try the pepti for a week to give your ds chance to get used to the new formula. Also definitely stick with the gaviscon.

Although our Ds was eventually diagnosed with cmpa after vomiting blood etc, previously to that he did go on to ranitidene to help with the reflux and it really helped with his symptoms. Once we were established on the right formula we were able to stop the ranitidene but it definitely saved our sanity in the meantime.

You probably already know and do this but keeping him upright for 30 minutes after every feed will also help massively.

If you aren't confident with the advice you are being given by gp push for a referral to a paediatrician. Have confidence in your own judgement but also as said before make sure you give things a chance to work before changing anything.

Lastly be assured that this awful phase doesn't last forever and he will get better.

Good luck!

There is a newer dairy-free formula available, which is more palatable than Neocate or Nutramigen. It's SMA Alfamino. It was prescribed for my DD on the advice of the paediatric allergy team at St Mary's Paddington. My DD took to it fine.

Hope your little one is better very soon.

We tried this before having to go onto Neocate as it didn't agree with DD. One thing I remember is that it was extremely runny, which was obviously not good for reflux. Have you added a thickener? We used Carobel (from over-the-counter) but this was a few years ago so I don't know if there's anything else now. You need to use a variflow teat if you thicken it (with a Y shaped hole).

Hi folks,

Thanks so much for the advice. I think my concern is that the allergy has never really been confirmed formally by a paediatrician or any diagnostic test and seeing him almost more or just as uncomfortable on the new formula is disheartening.
We will keep going with the pepti and see how we get on. Unfortunately we have already had to substitute some of his original formula back into his feeds as the gp only prescribed one pot without repeat prescription and we found ourselves running low yesterday so I have a call to make this morning!

Thank you I will keep you updated

Sarah

Tests only show up ige-mediated allergies which are the anaphylactic kind. Non-ige which are usually related to skin reactions and tummy issues don't show up, the only way you can confirm them is cutting it out and then reintroducing and see what happens. It also takes about 2-4 weeks for the proteins to leave the system so you need for him to be 'clean' for all that time and then challenge

Hi, my sympathies - I too remember this all too clearly from my own kids. Couple of things you might find helpful: it can take a couple of weeks for any change in formula to take effect. We had Neocate and while one child would drink it, the other would only tolerate it when mixed with Nesquik strawberry (at the Paediatric Consultant's suggestion) and even then we weaned him early. Re diagnostics: blood tests and even patch tests are very unreliable on the under 5's and as other poster has said, diagnosis is usually done on the basis of elimination and reintroduction of suspected allergens. I would definitely recommend seeing a paed consultant that specializes in allergies as a referral can take an age and if you can afford it, consider a private referral. We did as we were getting nowhere with the NHS and the sleep deprivation was driving me over the edge. If you're near London, lmk and I can give you the name of the guy we saw. Ask for prescription for lanzoprazole for the reflux, which should subside once hte allergy is being managed well. Our consultant also prescribed a type of thickener for the formula to help DS keep it down. Hang in there - it does get better! I know it probably feels now like it never will, but you'll be looking back on this soon x

Hi everyone,

So he has been solely on aptamil pepti for about four days now. The blood in his poo has gone and poops are of a smoother consistency however still loose - we have had a couple of nappy explosions and near misses. I have to add This is whilst also using gaviscon and I also tried thickening the feed with a bit of carobel. He is also windy and straining when having a movement and still seems uncomfortable when feeding.

Yesterday was difficult as he seemed very unsettled and wouldn't be put down in his basket. I could only get him to sleep if he was upright on me so not sure if his reflux is aggravated, he sounds ever so nasal and sometimes raspy in the throat and he cries so hard during a nappy change he almost loses his voice, it's heart breaking!

I feel like there's possibly two things to explore, whether I continue with the aptamil or look to change to something like neocate/alfamino which completely dairy free? Also do I look at alternative reflux treatment?

I am going to keep him on the pepti over the weekend to see what happens but will likely return to my gp if there isn't any improvement.

Any further advice would be really welcome thank you!

Sarah

I'd push for the dairy free formula and see if that sorts out the reflux first before looking at other meds. Given you've seen improvement with the almost-dairy-free formula suggests that cmpa is the cause and therefore treating the cause is better than managing/masking the symptoms (reflux)

So just a quick update, his stools today are similar to what we were seeing before we switched formula and tonight we had a nappy with spots of blood again.

I will be returning to the gp to seek a referral to a paediatrician as well as requesting a change of milk

Hi everyone, so we were prescribed neocate yesterday, and we tried to introduce it gradually, two ounces with three ounces of the pepti - absolutely would not take it, resulting in projectile vomit over mummy last night! He also refused 4 parts pepti and then refused a pepti bottle completely, to the point where he got so worked up he sent himself to sleep only to be up hungry an hour later. Still going little and often on the pepti, a couple of ounces here and there this morning and just had enough to fall asleep on me, but he still not a happy bub.

I know what I need to do in terms of just having to persist and introduce the neocate more gradually than I did but I'm reaching the end of my sanity! I have such an unhappy baby and all of this chopping and changing and trying to comfort him is just so hard. Any advice or even just words of encouragement would be greatly welcomed.

Thanks

Sarah

I think some people add vanilla extract or nesquick to neocate to make it palatable

We used strawberry nesquick at the dieticians suggestion but DD loathed Neocate. Unfortunately it was the only formula she was able to tolerate.
You have my every sympathy as I'vebeen there and it's an awful time
We were also prescribed omeprazole and carobel which I think someone else mentioned above when she was on a hydrolysed formula. However it turned out it was the allergy and not reflux and her sickness passed once she was on Neocate.
I really hope your little one starts to take to it soon. Good luck!

How is the transition going with the Neocate OP?
I really hope things are working out for you and that your baby is feeding a little better and is a bit happier

Thanks for asking
Well he's onto his second week transitioned fully onto Neocate.
I've since had to return to the gp as we had blood in the stools again after the first week. The gp has advised that we stop the gaviscon, as this could be the culprit, however he isn't constipated, poops are always loose. They're now super stinky too thanks to neocate. I think he seems a little better, we are having less poops, about three to four a day as opposed to thirteen when I first approached the gp. However it was the blood in the poop that caused us to consider the allergy and swap milks so I am one super confused mummy at the moment if gaviscon is the cause.
He still has moments where he seems very fussy, gets upset and arches and wriggles, and strains so hard you would think he is very bunged up! He is on a dose of ranitidine but I am concerned that without the gaviscon things may get worse, as the neocate is so thin and his vomit / spit up smells very acidic, like vinegar.
It all jut feels like one big guessing game which is annoying, confusing and frustrating but I'll just keep going for his sake.

Well done for making the transition! I'm really glad he seems a little better although it doesn't sound like it's completely resolved. I'm afraid I can't suggest anything re blood in the stools other than being persistent with your gp/paediatrician if things still aren't right.
DD had carobel (a thickener you can buy over the counter) and omeprazole which is stronger than ranitidine which may help if his reflux isn't entirely gone. The carobel really is a lot thicker than gaviscon so helps keep the liquid down better.
I remember what a difficult time it was and wouldn't wish it on anyone. It sounds like you are doing a great job for your little one xx

Thank you so much it's great to have the support. We do have carobel but I'm wondering if that would affect his bowels and straining the same way the gaviscon supposedly is??

I will definitely keep it in mind but give him a few days to see the effect of cutting out the gaviscon. I'm also hoping that things will get a bit better with time, letting his system adjust to being in the world as he was a couple of weeks early.

He's given us some smiles over the last couple of days so I'm seeing that as a positive sign!

Thanks xx

Hi user1492955376, how are you and LO getting on? Hope things are going ok and he's doing well? x

Im wpmdering how you and baby are

My 6 week old has been really unsettled at night and screams the house down as soon as he wakes up, took him to the gp they suggested we try gaviscon helped a bit but not a great deal Over the weekend he got progressively worse with crying out in pain went to out of hours doc they said he’s fine it’s colic :| then took him back to gp who suggested we try colief he seemed to be a lot calmer however got a phone call from the gp who said they had spoken to the dietitian and they believe he may be allergic to cows milk ( like his dad was when he was a baby) they told us to stop using everything and just use the aptamil pepti 1 milk we have done this for the last couple of days and he won’t sleep for any period of time when he does sleep something sort of pain wakes him up and he’s screaming again, he will only drink about 2-3 oz of milk where as before he was drinking 5 oz! Anyone have any suggestions I’ve tried everything and am now lost,
Symptoms at the moment are:
Constant crying
Sicky
Won’t sleep
Won’t drink any more than 2-3oz of milk
Sometimes green poo

Hiw did everyone get on in the end? I am on day 4 of aptimil pepti and my LO seems to hate it - will only drink 2oz and then screams and cries whilst still trying to drink more. I don't know what to do for the best.

Hi, how did you get on? My DD has been prescribed with Pepti and she seems worse with it and also had reflux!

Hi, did you get to the bottom of this?

Anyone have updates on this ? Struggling with the same problems