AIBU to ask about breastfed babies and CMPA?

[Figuringitout]

I know I am, as this isn’t really the place to ask but I am hoping for a bit of traffic. If your baby was breastfed and diagnosed with CMPA would you mind telling me the following:

• When they first started showing symptoms
• What the symptoms were
• How it was treated
• If you followed an elimination diet how effective it was and how long it took to make a difference. Thanks in advance!

Hi. Looking back I'd say symptoms started from day 1. From first feed onwards was a very unhappy baby until we started weaning at 6 months. Lots of symptoms:
Barely slept (6-8 hours max per 24 hours), very restless after feeds and sleep was very noisy/wet-sounding breathing;
Cradle cap that covered the whole head;
Spots all over chest;
Feeds could take 1-2 hours due to throwing up several times and crying;
Doing up to 10 completely liquid poos per day;
Even when awake, breathing very heavily as though snoring;
Crying all the time and unable to be comforted.

Saw consultant at 8 weeks who suspected CMPA through my milk. I excluded dairy but it made no difference (but that's probably because he turned out to have other allergies too).
Finally moved onto Neocate at 5 months but can't really say that improved things much either in terms of the nappies, although he did become incredibly happy which was obviously lovely after 5 months of sheer hell .
Skin prick tests at 6 months (they said there was no point doing them earlier due to the immature immune system throwing up false positives/negatived) which confirmed several allergies so weaning from day 1 excluded all his allergens.

I hope you get the help you need if you are looking at this.

Oh, sorry forgot another symptom: birth weight was 90th centile but fell to under 25th by 8 weeks when we saw the consultant (height was 91st so was very skinny by that point).

My sister went dairy free. Bt in the end it was decided he had a nut allergy not dairy. But she was able to bf with leaving out the dairy.

Thank you @PorridgeAgainAbney that’s really helpful. She’s 8 weeks and symptoms only began 2 weeks ago - although she has been quite windy/wriggly from day one. She’s not lost weight and is still holding her centile - she’s also sleeping well and is not overly fussy. However, she has liquid green poo with mucus and now blood which has made Dr suspect CMPA. I have been advised to wait another week to see if it’s a virus and then begin elimination diet. However, I don’t know if the symptoms fit or if she would have a more severe reaction, or if there is a spectrum and hers is only a mild intolerance. I’m basically trying to get some information and first hand experience as the Dr didn’t seem to know that much about it.

Mine seemed OK on breastmilk. His eczema appeared after I tried a formula dreamfeed at 5m when he had a ravenous growth spurt that I struggled with.

The obvious allergy symptoms appeared with weaning. Baby porridge made his face swell up, you could see him inflating like a balloon. Despite dashing him off to the GP in a panic (it's 2 mins away) it took a couple more visits to get a referral, and CMPA, egg allergy and soya intolerance were finally identified at 12m. We were down to morning and night feeds by then and weaning off at 13m anyway so there was little point in changing my diet for him at that stage.

Both of mine have had it - both reacted as babies to soya and DD couldn't cope with egg while DS seemed to acquire lactose intolerance as well.

Both colicky from birth, millions of poos/day, green and explosive, both lost weight.

DD threw up loads, DS more silent reflux style frantic swallowing- he thrived when weaned, she's always been more picky.

DD completed Milk Ladder by 2.5 but always gets more sensitive after the inevitable stomach bugs and doesn't seem to deal well with masses of dairy - will need careful management of Christmas desserts.

Everything PorridgeAgainAbney said, plus he also turned out to be allergic to peanuts and legumes.
His main symptom was really extreme and immediate digestive upsets. Think projectile brown water. I threw away numerous clothes and shoes thanks to idiots who thought I was making it up, and it was obviously humiliating for him.

He's now an adult and practically symptom free. He's never risked eating a whole bag of peanuts but he can drink a milkshake.

I had to be super strict when fully breastfeeding but DS can now cope with me eating milk chocolate and cheese now he only feeds once a day.

Hi I had to go dairy free while bf my now 4 year old. She was a very colicky baby from the start, lots of reflux and endless comfort feeding in the evenings until she threw up and crying from early afternoon til about 10/11 at night. As she got older her reflux got much worse and she started refusing to feed and stopped gaining weight, had silent reflux and no matter how long I held her up after a feed (hours!) she'd be sick (usually clear with curdled milk) and at its peak she smelled of stomach acid which was heartbreaking.
I cut out all dairy and she was a completely different baby within 24/48 hours. It wasn't until 4 months though and it was a lovely HV who suggested CMPA when I cried at yet another weigh session where she hadn't gained weight. Cutting it out was hard at first but I found a lot of support online. She's still got CMPA but hers is non ige so all digestive symptoms. Some babies with CMPA also react to soya so it's worth beating that in mind x

My daughter's symptoms appeared around 4 weeks. Very unsettled and she was constantly sick between feeds. She also did very smelly poos, think three dirty nappies in 3 hours , throughout the day and night
Had to be constantly held upright and skin was peppered with a redrash. At 7 weeks I completely cutout dairy from my diet. Three days in and I started seeing a difference. Nappies reduced, skin started clearing, she finally stopped moaning and icould lay her down flat to sleep.
My go was useless but thanks to the HV I was referred to peadtrician who, 18 months, helped us through the milk ladder and we slowly re introduced dairy. I exclusively breastfed her until she was 2 and stayed dairy free myself until then.

@randoms - she seems to gasp and swallow a lot, especially as she is falling asleep. I just don’t know if her symptoms are severe enough for it to be CMPA but there is definitely something not right.

Symptoms from pretty much day one. But really obvious after a few weeks. Took a couple of months to diagnose.

We had:

Bad cradle cap
Very bad gas/ stomach pain
Being sick after every feed. Throwing up ateast half the feed each time.
Mucus nappies and regular green slimy poo.

Those could be symptoms of a few things, but after trying latch and checking for tongue tie etc. we tried elimination. Clear difference within a week. Challenged after a month with expressed milk before dairy elimination. Symptoms returned for a couple of days as it got out of his system.

He jumped from 9th to 25th percentile after I went dairy free.

Hi OP I have two children both breastfed through cmpa and soya allergies but didn't need to cut out as signs weren't obvious until weaning. My DD is nearly 6 and still cannot tolerate anything more than baked milk.
If you are on Facebook there are some brilliant groups , just search main group cmpa and also the breastfeeding cmpa.

Right - this has convinced me. I’m not going to wait a week, I’ll cut diary out from tomorrow and see what happens. Next questions are: should I take a calcium supplement and also do I need to get referred to the paediatrician?

Gasping for air and swallowing are signs of silent reflux. The acid is coming back up and cmpa could be causing this.

DS poo was (and still is) very yellow rather than green, and yes, lots of wind.

The dairy allery was originally non- IgE (didn't react on skin prick test) so was diagnosed based on anecdotal evidence: so initally wasn't classed as an immediate-reaction allergy that could be anaphalyactic. It did change to IgE at the next test 6 months later though so it can change as their immune systems change and develop and become sensitised to allergens they are avoiding.

It's good that her weight and sleep are ok. I started a diary to record feed times, mood, poos, sleep, vomiting, etc. Also videoed things that might come and go so that consultant could see the whole picture in case they happened to see us on a good day (or hour!).

Agree - gasping is silent reflux. I'd also get a good calcium and vit d supplement, I didn't at first and got shaky hands a few weeks in! Best of luck x

My DS started showing symptoms very early on, possibly from day 1. Symptoms were feeding for a short time, screaming then puking, then repeating an hour later as still hungry. Terrible nappies, 10-12 a day. Terrible sleeper.

We first sought help at about 10 weeks old, but didn't get a proper diagnosis until 6months old as we kept getting fobbed off with reflux medication.

I tried cutting out dairy which helped initially but then I started using soya milk, which he was also allergic to. Skin prick tests at 6 months old showed multiple allergies.

If you do cut out dairy, as Norbert said, worth ensuring you also cut soya as the proteins are very similar. Also bear in mind that improvements aren't always so quick; it takes 2 weeks for the dairy protein to be elimated from your body so up to 4 weeks for baby to be completely dairy free (because obvs for the first 2 weeks they are still receiving diminishing amounts fro. you). So, maybe the diary would help you to see tiny improvements if they aren't dramatic and it's getting you down.

Op join the silent reflux, reflux, cmpa, allergies, intolerance group on FB. Invaluable advice on there

Thanks everyone- this has been really helpful. I will join the Facebook groups too

DS1 had it. I'd say from day 1. Started with him bringing up his first feeds. I remember asking someone if I was overfeeding him because it was like he couldn't keep anything down - now know that's ridiculous because my milk hadn't even came in and it was just small amounts of colostrum.

Symptoms - bringing up milk constantly, wouldn't tolerate lying on his back, frequent comfort feeding, inconsolable crying from 3pm til 11pm every day

Treatment - ranitidine took the edge off the reflux until I decided to cut out dairy and soya when he was 5 months. Took about 2 weeks to start seeing a difference, new baby after a month

He also had eczema which turned out to be due to egg allergy and that took about 6 weeks of egg free to resolve completely.

Had a dietician appointment when he was 9 months to talk about reintroduction from 12 months old

Did the milk/soya/egg ladders a few times, finally successful by about 2 years old and now no allergies :)

Ugh I paragraphed all of that. Sorry it came out in one big one!

It will take anything up to 6 weeks for your milk to be free of dairy. Many babies (including mine) who are cmpa also react to beef and soya. We were told by paeds to cut all of these out at once to get my bm clear of them all. Then test 1 at a time to see how baby reacted.

Looking back we had symptoms from day 1 but because they were not gut reactions they were missed. Our symptoms were breathing/coughing problems, excema, failure to thrive (but no vomiting, refusing feeds or anything like that) in first 6 months. Not picked up until we started weaning and she reacted with hives, running eyes/nose, swelling face etc on direct ingestion.

She was c8 months when diagnosed. I followed dairy, beef and soy free diet for 3 months. Allergy Specialist paed then put her on piritin and recommend I resume normal diet. She said kids who are bf by mum with normal diet with antihistamine are more likely to grow out of allergies quickly. Although by this stage she was 11 months so not feeding as much.

She's now 16 months, still feeds 3/4 times a day. I have normal diet and she's off all meds. She has failed all reintroduction ladders for direct ingestion, so still can't have dairy, beef or soya. She also reacts to strawberry, raspberry, pineapple and rye.
The cmpa Facebook pages are brilliant.
Good luck

My youngest has CMPI and looking bad had symptoms from day 1 but we put it down to tongue tie at first. She gasped and pulled off the breast literally every few seconds, because it was causing her pain, by then she’d try to latch against straight away because she was so hungry.
She also made a stridor sound, especially when she was upset or agitated. Her nappies were green slimy water that burnt the skin off her bottom and none of the creams we tried made any difference until I cut dairy out, and changed the formula she had as well as we were mixed feeding.
She still can’t tolerate dairy at nearly 2 and still has silent reflux that isn’t controlled by meds so far. She also has eczema. She was waking every half an hour and went from above the 25th centile to the 2nd. She’s now up above the 50th though.
It took a long time for us to get her more comfortable and meant that she ended up refusing to breast feed, so I ended up exclusively expressing and bottle feeding. I wish I’d pushed more with the docs earlier on and maybe then she’d still be breastfeeding now.

She was a lot better after about 10 days when I cut dairy & soya out. She can have soya now, but still can’t tolerate dairy.