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Cow's milk protein intolerance and formula

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#1 Disydo2018

Posted 27 December 2019 - 06:47 PM

Hello, I have a 5 week old baby with a suspected cow's milk protein intolerance. He was put on allerpro for ten days but this didn't fix his symptoms so he's just today started pepti junior.

Does anyone have experience with this? I'm wondering how long it will take to work/improve. My baby is straining during feeding, crying and very uncomfortable. I'd be very interested to hear others experiences.


#2 Apageintime

Posted 27 December 2019 - 06:50 PM

I cut dairy out of my own diet and kept breastfeeding. It seemed to settle really quickly for my son.

Could you relactate or source some donor milk?

#3 rubyskye

Posted 27 December 2019 - 06:55 PM

View PostApageintime, on 27 December 2019 - 06:50 PM, said:

I cut dairy out of my own diet and kept breastfeeding. It seemed to settle really quickly for my son.

Could you relactate or source some donor milk?

Similar here, our experience was CMPA diagnosed (finally) at 4 months, I cut all dairy and soy out of my diet and kept breastfeeding. Within a week my son showed improvement, though it took a few more weeks for his symptoms to clear. This was under the care of a Paediatric Allergist.  

Good luck OP.

Edited by rubyskye, 27 December 2019 - 06:57 PM.

#4 PrincessPeach

Posted 27 December 2019 - 06:55 PM

SIL was breastfeeding as well, but she saw a massive improvement within 48 hours of totally cutting dairy from her diet.

ETA: i'd assume the same results would be from formula.

Edited by PrincessPeach, 27 December 2019 - 09:52 PM.

#5 countrychic29

Posted 27 December 2019 - 07:04 PM

Not sure if you are still able to bfeed or not - both my children had CMPI (plus soy, wheat & egg) I eliminated from my diet and they were better within 48hrs
First diagnosed at 9 weeks the second diagnosed at 2 weeks, it wasn’t easy in fact it was one of the reason we didn’t go for a 3rd but the formula options were allepro and that was it for us, for some reason Pepti wasn’t suitable, a friend could only formula feed and she had to add a sweetener to allepro and it was tough until her baby started solids

Sorry wish I was more help, maybe depending on the severity your Bub might tolerate a goats milk formula?

#6 Mollyksy

Posted 27 December 2019 - 07:04 PM

I saw an incremental improvement a few days into allerpro. My DS had excema that started improving, he stopped screaming so much. He was closer to 5 months old though. So given yours in so young and has more severe symptoms maybe itll take longer? But hopefully the next few days you could start to see incremental improvements.

And I couldn't breast feed. Never ever got milk. Donor milk was unheard of in my town. Formula is not the devil. I appreciate others who did and could breast feed made it work but we dont know the OPs story. I guess I'm sensitive to the issue! I hope you see improvement OP. Good on you being so on the ball and having doctors who are supportive. My first paed said it was normal for babies to scream more than half the day and had I tried attachment parenting?!! So I was on my own muddling through with the help of Google and forums like this and a lovely GP who learned along with me!

#7 Mollyksy

Posted 27 December 2019 - 07:08 PM

DS tolerated allerpro fine until almost 3 years old. I thought it tasted foul but at 5 months he accepted it (gradual mix into previous formula until it was just allerpro). My biggest issue was supply as it hadn't long been released and the factory had some issue and it was the only one of it's kind.

OP if your bub is severe then it's possible allerpro wasnt enough and peptic jnr works. Hopefully bub is small enough to accept it.

#8 Disydo2018

Posted 27 December 2019 - 07:15 PM

Thanks everyone, and thanks mollysky for the comments about breastfeeding.

I should give some more details. This is my first baby and I planned to breastfeed. We had a lot of trouble - we managed to hand express colostrum and I pumped after each feed but my milk didn’t come in and the baby couldn’t latch, even with nipple shields. We saw a lactation consultant and she said his mouth was too small and the only option was medication and expressing so we decided not to go down that route. The baby has actually been on formula top ups since day 1 - the paediatrician advised this when he was born, I can’t remember why. I had an emergency cesarean and was pretty out of it - so we just did that. I was disappointed that breastfeeding didn’t work but made my peace with formula. So baby was on nan supreme before being switched to allerpro and now the pepti junior. My impression was that CMPD was easier to manage on formula and that if we hadn’t already been on it we would have been strongly advised to switch - but that Kat just be one opinion, I’m sure others know more, I’m still learning. Given that I never really got any milk even with the constant attempts to feed and the pumping, I don’t think it’s an option for me.

It’s been really hard seeing my baby in so much pain and distress - I just want him to be better and sm really hoping we see improvement soon.

I’m seeing a paediatrician- he said this type of intolerance has become very common :-( but I’m hoping that means they know how to fix it! Again, would love to hear others’ experiences.

Thank you for all the comments so far.

#9 Disydo2018

Posted 27 December 2019 - 07:16 PM

Just saw your second message mollysky, baby has had three feeds of pepti today and hasn’t been bothered at all by the taste so fingers crossed that continues.

#10 Mollyksy

Posted 27 December 2019 - 07:29 PM

Oh you've been through the wringer. Your story sounds very similar! Fingers crossed bubs sees an improvement soon and yaay no objection to the taste. My DS like I said was fine for years (and if this works, it may be the case you'll need to keep bubs on it while introducing food. We eventually moved to rice milk but kept the formula until age 3 mainly for my peace of mind, and the fact it wasnt hurting anything!).

You are doing the absolute best for the baby. You've got a supportive doctor. You are on to it super quick. You've had a rough start but gosh mumma you've come roaring out of the gates!!

My understanding with cmpi and breastfeeding is that it's hard to eliminate everything and its associated with soy intolerance too so a breast feeding mum sometimes has to have a super strict diet and even still allergens can slip through. It certainly can be done but is a personal choice weighing up everything.

I went through major guilt thinking if I'd been able to breastfeed I'd have saved my baby suffering. Not sure how as I would have eaten dairy! New mums and lack of sleep and upset babies don't make for clear thinking. OP you've gone above and beyond. Please be kind to yourself. You are doing all the right things. Hang in there.

#11 rubyskye

Posted 27 December 2019 - 07:53 PM

Sorry OP, I read as you were still breastfeeding. My apologies. I don't have experience with formula, just ignore my post!
It sounds like you've been through alot, I wish you all the best. Mollyksy has some good advice to be kind with yourself and to hang in there.

#12 Apageintime

Posted 27 December 2019 - 09:16 PM

If you still want to breastfeed it could be entirely possible. Did you have bub checked for lip and tongue tie? A lot of CMPI babies also seem to have tongue ties (my son was).

If it's still something you want to consider I'd be seeing an international board certified lactation consultant (not just a regular LC - anyone can call themselves this).

Was IGT discussed with you? Or an SNS?

#13 Paddlepop

Posted 27 December 2019 - 09:33 PM

How about everyone quit telling the OP to breastfeed? This isn't the breastfeeding section. It's the formula and supplemental feeding section. The OP has already stated that she has attempted breastfeeding and it didn't work. Have some respect for her decision as an informed adult woman.

Formula isn't poison. Formula isn't evil. Formula is a bloody marvelous invention.

Disydo2018: I can't help at all with the CMPI, sorry, but I get it about not producing milk. All I managed to get into my baby was 0.5mL of hand expressed colostrum but she promptly spat it out anyway. Pumping produced nothing. Not a drop. DD couldn't latch properly which turned out to be due to a tongue and upper lip tie that wasn't detected by the hospital. She was fully formula fed from 2 days old and I regret nothing. She was fed and happy, I was happy, and DH respected my decision to not continue attempting to breastfeed. I bloody loved formula. Freed me up from being tied to DD 24/7 and needing to do every single feed. DH did quite a lot of feeds which allowed me to retain my sanity and health. He loved being able to feed her. I hope that your little one starts showing signs of improvement soon. If not, he might need a more hydrolysed formula. There are members on here with a wealth of knowledge. I think there's old threads about it in the food allergy and intolerance section. Might be worth a browse.

#14 Ellie bean

Posted 27 December 2019 - 09:39 PM

Hey OP I had a different journey, I had plenty of milk but my babies had CMPI or a generalised protein intolerance of some sort (the paed gastroenterologist couldnt be certain) and severe silent reflux and were in a lot of pain, cutting out dairy didn’t work for us, accepting medical advice and moving to pepti junior with both of them is a decision I’m still very proud of as it was the best one for our particular circumstances.
With my first child we saw a reduction in her extreme screaming within around 48 hours on pepti and she was more settled overall (compared to what she had been) within a week I think. It was however accompanied by constipation and she did need suppositories for a while- for us the pros outweighed the cons but obviously every baby is different. If you feel things aren’t improving I would contact your paediatrician asap.
Good luck, I know how tough it is and I’m sure you are doing an amazing job

#15 Ellie bean

Posted 27 December 2019 - 09:44 PM

Oh also I personally found ff more enjoyable as I could see their cute little faces (admittedly the fact they were no longer screaming the house down quite so much between feeds probably helped ;) )

#16 Acidulous Osprey

Posted 27 December 2019 - 09:46 PM

FWIW I have a son with extreme food intolerances and I was told by one allergist that the worst thing I ever did for him was extended breastfeeding.  He's still on elemental formula at the age of 22 years and probably will be lifelong.  

Don't worry though, our outcome is extreme and very rare.

#17 Zeppelina

Posted 27 December 2019 - 09:51 PM

Hi OP, wow you are doing amazingly well, considering everything you've been through so far. I know it feels so overwhelming, but you will get through this and so will your baby!

My DD was diagnosed with CMPI at around 15 weeks, after about 5 weeks of screaming during feeds and increasing food refusal (first refusing breast, even after I cut out dairy, and then refusing bottle/formula to the point where we ended up in hospital for 5 days for her to be fed through a nasal tube), and then for the last two weeks of that time projectile vomiting any small amounts we did actually manage to get down her.

The second paed we saw (the first was a know-it-all idiot) gave us Alfamino to try. Oh my goodness, what a life-saver. Within 48 hours, she'd stopped vomiting her feeds. And within a week, she was taking in almost the recommended amount for her age/weight - and no more crying or screaming. By about two weeks, you wouldn't have known there had ever been a problem.

I hope you have as quick a result as we did. Most importantly, if in doubt, get a second opinion - and trust yourself! You know your baby. If Pepti doesn't work, ask to try Neocate or Alfamino (Alfamino is meant to taste better), which are fully amino-acid based formulas.

eta: DD is now 4.5yo and is completely fine with yoghurt and cheese, and can have smallish amounts of milk, which she actually loves (too much milk still gives her reflux, and she has very mild eczema at times)

edited again to remove incorrect fact!

Edited by Sled Zeppelin(a), 27 December 2019 - 10:04 PM.

#18 afterlaughter

Posted 27 December 2019 - 09:55 PM

Pepti Junior still has diary in it, it is broken down extensively but it’s still there. You can get  novelac Allergy at the chemist over the counter that has no diary or I would be asking to try a script of diary free scripted formula. I breastfeed while on a diary and sit free diet and then when returning to work and breastfeeding became more difficult I moved to Alfamino on script from the pead.

#19 Disydo2018

Posted 28 December 2019 - 07:37 PM

Thanks so much everyone for all the replies and also for the encouragement - that means a lot, thank you.

Paddlepop and elliebean, I relate a lot to what you said about the benefits of formula - I don't think my mental health would be standing up to all this if I was also trying to breastfeed - that would be I would have to do every single feed (with a baby that is in pain and straining and unable to feed properly) AND give up all dairy and anything at all that contained milk solids - the list from the paed was a page long of foods to avoid. So I'm happy with the formula feeding, but I appreciate your comments, agapeintime - I'm afraid I don't know what IGT or SNS are but I feel breastfeeding just isn't right for me and my baby.

Thanks to everyone who shared their experiences on the special formulas - I'm sorry that others have gone through this. We've had one day on pepti junior now and I think it's too early to tell if it's making a difference. He's still vomiting a lot and screaming a bit but perhaps a little less? I think we need at least 48 hours to know - perhaps longer. But really, really hoping things turn around soon.

#20 CrankyM

Posted 28 December 2019 - 07:45 PM

My child was put straight on neocate. We were in a bit of a different situation (I was still breastfeeding, he had complete bottle refusal bought on from the pain attempting to top him up with normal formula before we realised dairy (and soy) were a major issue). Symptoms did improve from probably 2-4 days after I went dairy/soy free and we started topping up with neocate. But I’d been dairy/soy free for at least a month before we started topping up (I don’t produce enough milk even with medication and honestly I probably would have preferred he totally went bottle fed but the kid logged bottles and so I was pretty much stuck mixed feeding. We used a 30ml syringe until he was 5ish months and we finally found a cup he would take). I was told by the pead that it will take at least a week for all the dairy proteins to leave his system and there is a chance that you will need to move to a complete elemental formula such as neocate or I think the other is called elecare or similar. We were put straight on neocate because R was basically failure to thrive and had gained a whole 500g since birth at 3 months. (It’s a long story and involves a number of incompetent drs).

To give you hope, my kiddo outgrew his issues completely by about 4.5. Before that though he was incredibly sensitive to soy and dairy.

Edited by MayaTheGrinch, 28 December 2019 - 07:48 PM.

#21 Ellie bean

Posted 29 December 2019 - 12:19 AM

Is your baby on reflux medication Disydo? Sorry if you said, I haven’t reread the whole thread.
A lot (not all) cmpi bubs also have reflux or silent reflux. I forgot to say in my original post, it was only the combo of pepti junior and Losec that got dd’s symptoms under control. Definitely something to consider talking to your dr about (obviously you don’t want to medicate a baby except on medical advice!)
The RISA website (reflux infants association- charity for reflux babies and parents) has a lot of helpful info

#22 Paddlepop

Posted 29 December 2019 - 12:50 AM

View PostApageintime, on 27 December 2019 - 09:16 PM, said:

Was IGT discussed with you? Or an SNS?

View PostDisydo2018, on 28 December 2019 - 07:37 PM, said:

agapeintime - I'm afraid I don't know what IGT or SNS are but I feel breastfeeding just isn't right for me and my baby.

IGT is insufficient glandular tissue in the breasts, so is only relevant to know about if you want to breastfeed now or in the future with future babies.

SNS is supplemental nursing system. It's a tube attached near the nipple so that when baby breastfeeds it is supplemented by a bag of expressed breast milk or formula that is delivered via the tube. Gives the breasts stimulation to produce more milk, allows baby to practice breastfeeding and develop a better latch, and ensures that baby is receiving adequate nutrition. Again, only relevant if breastfeeding.

Hope that you and baby are doing okay.

#23 Disydo2018

Posted 29 December 2019 - 02:54 AM

Thanks paddle pop! I think it’s too early to tell if the formula is working but he’s no worse and I’m hopeful that there’s a small improvement,.. one really good thing is that none of this has affected his weight gain so he’s healthy from that perspective.

Ellie, Baby has been on Nexium for about three weeks because he was vomiting small spots of blood when straining. That was the first thing that made me take him to the paed, it was pretty scary. He’s only had a couple of spots since being on the Nexium. The doctor said that the blood could have been caused by a couple of things and it wasn’t possible to know which but that the Nexium would fix it regardless.

Is Nexium like losec? We’re staying on it for another week. I’ve wondered about reflux too - apparently a lot of reflux like symptoms are due to CMPI but who knows! He’s definitely still vomiting so we’ll see.

#24 Mollyksy

Posted 29 December 2019 - 06:45 AM

I forgot about reflux too. Blocked that all out! I kept DS on the reflux meds even when allerpro worked. I tried to wean him off but nope! I did have to try a couple though. We had lose first and I cant remember the second but I got it from a compound pharmacy. Good luck!

#25 Ellie bean

Posted 29 December 2019 - 09:52 AM

Yep Nexium is a reflux medication :)
Here’s hoping that once the dairy is out of his system and his oesophageal heals you will see huge improvements!

Mollysky that reminds me I couldn’t successfully wean DD off the meds till after 2 but DS was able to be weaned earlier

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