Cow’s milk protein allergy - any light at the end of the tunnel?

[VillageFete]

Hi,

My son is 7 weeks old. Since birth (Formula fed) He has been full of excess wind from his bottom, sometimes it’s like a machine gun is going off He’s been unsettled and uncomfortable for a couple of weeks now. Sometimes pulling away from a feed, stomach making strange noises, lots of wind and a stuffy nose. Since last Friday he’s had lots and lots of mucusy dirty nappies, on average 5 a day and always 1 through the night.

Took him to GP on Wednesday who said he could have a bug so sent a stool sample off. He also queried a CMPA so changed his milk to Aptamil Pepti 1, he said trial it for 6 weeks and then reintroduce SMA and if there’s been an improvement on Aptamil and then a deterioration on SMA then a CMPA can be diagnosed.

Yesterday he developed a rash on his back and was very unsettled and not really taking his feeds. We took him to hospital to be checked over. Dr said to keep going with the new milk, chase the stool sample results up next week and he also said he’s teething! He said his gums are inflamed and he thinks this explains the snotty nose and some of the fussiness.

In your experience with your own kids, is it like to be a CMPA? I think so
I don’t know much about it yet but I keep reading horror stories. Can anyone tell me is there light at the end of the tunnel? If it is CMPA will he hopefully be able to tolerate some dairy products eventually? I feel sad that he may feel left out as a toddler at parties etc if there’s no suitable alternatives. I was really hoping he may have outgrown it before he starts nursery at 13 months old. Is that possible? Will I have help with weaning?

Anyone’s child have a CMPA and has outgrown it or can still tolerate some dairy at a young age?

Reflux is a common symptom of cmpa. My son had silent reflux (no vomiting). He hated lying down, hated nappy changes, would sleep on us but not in carrycot/crib (sleepyhead helped, maybe because of slight recline).

If it is reflux, keep upright after feeds and consider getting a wedgehog for the crib. It should ease as the cows milk protein leaves his system but if not ask GP about meds.

I remember your worry so well. I really feel for you but I can and does get better. It honestly does although you may not feel it at the moment.
The thing is that CMPA and reflux often present with very similar symptoms. Both my DDs were treated for reflux but in hindsight it was probably the milk as once they were on Neocate it disappeared.
Because of this drs often prescribe anti reflux medication along with a prescription formula. If your DS is having trouble keeping the formula down and only time will tell, he may need anti reflux medication so something like ranitidine and carobel or omeprazole if the reflux is really bad. It may be that Aptamil Pepti is just not broken down enough for him.
I would try the milk a couple of weeks. Keep a diary perhaps of his symptoms so you can present it to your GP.
We're in Birmingham but both DDs were under a paediatrician and a dietician which helped as the GP's in my experience weren't great so maybe push for that when you next speak to your dr.
for you as it really is very stressful at first but once it's sorted you will be able to enjoy your baby

My 13 week old was diagnosed with CMPA at 11 weeks. My GP told me he was just a windy baby at our 6 week scan (stupid woman) so I kept pushing and my HV referred us to the dietitian. He prescribed nutrimigen and he's been a lot better on that. The HV will see us in August to talk about the weaning process and how to do it so not to make things worse etc. Ask for a dietitian referral, they were brilliant!

My daughter is 13 weeks and was diagnosed with CMPA 3 weeks ago. This followed a two night stay in hospital at 5 weeks, where she was diagnosed with silent reflux (she rarely vomited and has gained weight aligned with her centile line and apparently this makes reflux and CMPA difficult to diagnose) and a further two hospital visits with her symptoms reoccurring. She has always hated lying on her back and would scream inconsolably, particularly in the evening.
She was prescribed aptamil pepti junior at her hospital visit 3 weeks ago, which initially made the problem worse - the consistency is so thin, she vomited almost all of it back up and became slightly dehydrated. At our last hospital visit, she was prescribed carabel, which I mix into her milk to thicken it and two weeks on, her symptoms are much better, though not entirely gone. She also takes ranitidine.
Due to her hospital visits, she's been referred to a paediatric consultant and a dietician and the consultant wants to try reintroducing cows milk protein prior to starting weening.
I'm worried about weening and the longer-term implications of the allergy but after weeks of her being really unwell, it's such a relief to see her more settled.
If you're concerned about the milk consistency, I'd recommend instant carabel as it really does make a difference.

Thank you everyone. I saw a lovely GP today who assured me she will make sure we get this sorted, she was very sympathetic. She prescribed Nutramigen and Gaviscon for my DS - it was confirmed he has silent reflux due to pushing off the bottle and screaming in the middle of his feed She wants to see us again on Monday to see how he is doing on the Nutramigen and Gaviscon. She may then prescribe Ranitidine if it’s needed. She wants us to stick Nutramigen out for a few weeks. I think this is possibly broken down more than Aptamil Pepti? She is going to look in to refering us to a dietician.

@Eisley How long until you saw a positive difference with the Nutramigen? It’s bloody hard this, isn’t it

@Hollywoodcheesecake Is she still on Aptamil Pepti now? Does the Consultant want you to put her back on regular formula to see how she reacts? Hopefully they’ll outgrow the allergy sooner than later. I am praying my son does.

We had to ease him on to it, reduce his regular formula by an ounce a day and replace with the nutrimaigen but when he was fully on it we saw a difference in 2 days. And now he's finally settling after two weeks

@VillageFete Yes, she's still on the Pepti Junior. I asked about the fully hydrolysed milk but it apparently tastes horrible and because of her age, the consultant doesn't think she'd drink it at all... so it's the Pepti plus the Carabel. She can't tolerate more than 4 ounces at a time but is quite big for her age, so she feeds every 2.5 hours during the day to get enough milk to sustain her.
We have an appointment in early June with the consultant and I think he'll suggest trying normal formula again then. It's not entirely clear whether she has CMPA, an intolerance or just really bad reflux so it's a bit trial and error. There's also a possibility they'll recommend early weening, with or without cows milk, which I'm not too sure about so we'll see...

I did a hard switch to the hydrolysed formula (not using the name as i am in the US and the brands are different here). DS wasnt that bothered about the taste, maybe because he had a couple of gulps and didnt start immediately getting a tummy ache. We saw a difference in a couple of days, but I have heard it can take a while if more damage was done to the gut prior to the switch.

Just watch out for doctors telling you to switch to soya (they probably won’t at this stage as your formula rather than breast feeding) lots of people who suspect cows milk allergy are told to switch to soya but lots of babies who can’t habe dairy also can’t tollerate soya

@Daisydreaming Would they tend to outgrow the soya allergy at the same time as cow’s milk allergy? I assume when weaning him I could try a soya yoghurt to see how he reacts to it.

I would probably just wait to introduce soya until you are weaning onto cows milk which we did at about 18 months (initially) think that mini cheddars was the first thing on the ladder. The one of mine who did the best was completely dairy and soya free until 18 months and then we introduced it in a graded way. Having that complete break meant that his gut was settled by the time we weaned him.

Yes you could test soya by giving a soya yoghurt when weaning. It is helpful to know whether they tolerate soya.