8wk old with cow's milk allergy, but breastfed only - likely?

[gretagrape]

Hi. My son has been unsettled since day 1 but getting worse - always crying, only sleeps at night because so tired after being awake all day, not happy unless upright, horrendous wind, pain before poo (but poo is runny), vomiting, gasping/choking during/after feeds, feeds lasting up to 2 hours. I've seen various GP's - diagnosed acid reflux, then lactose intolerance and now cow's milk allergy.

When I told GP about milk allergy he said it's almost unheard of in bf babies - not very confidence inducing. Feel like I'm being fobbed off as neurotic 1st timer as baby always calm when examined but other 23 hrs a day is in obvious discomfort (and other friends/family have said it's clearly not just 'normal' crying).
I've been off dairy for a week and can't see any difference, and paedeatrician has kept him on ranitidene and dom peridone for the acid reflux so it feels like he's hedging his bets as he has no idea what is actually wrong but won't actually do any tests - just tells us to see how the latest diagnosis/meds goes then come back if no improvement.
Any ideas gratefully received as I hate seeing my bub like this - anyone else's baby diagnosed with milk allergy when only bf'ing?
x

Hi there
Not sure about the bf part as I ff but my baby is cows milk protein and lactose intolerant. Have u thought about lactose too? we had all the symptoms you describe.
We use Neocate formula and it works wonders, maybe take a look at the lactose in your diet too?

We are also on the same medication!

Greg I think your GP is talking rubbish, of course Bf babies cam be allergic to cows milk.

My DS is 7mo and looking back I realise that he was suffering (only just got diagnosis after giving him a yogurt and then requiring an ambulance!). he was really gassy and unsettled then developed really bad ezcema. I've cut out dairy also, some improvement (thou I suspect other allergies).

Are you using soya? If so just be aware that a lot of babies who are allergic to cows milk proteins are also allergic to soya.

Can I recommend you hopping onto the allergy forum on mn, very helpful!

Also (sorry for hijack) alexa did you dc take neocate easily as we've been prescribed it as I've got to go back to work soon. I've read it is nasty!

Oh and also sympathies with going to Gp with nice calm baby and looking slightly deranged when you describe an unsettled one. You feel like a prat!

We kept getting fobbed off by various GPs saying that exclusively BF babies couldn't be cows milk protein intolerant. We had to wait 9m until DS had lost half his body weight and developed colitis before the GP grudgingly referred us to paed. Keep pushing for a referral to a paed ASAP.

As far as I remember, it took 2-3 weeks of being dairy free before I really saw a difference in DS, so maybe you need to carry on being DF for few more weeks to really see if it helps.

It can take up to a fortnight to see results. Your gp is talking rubbish, quite frankly. You really need a referral to the lead allergy clinic for help. Good luck x

He could be reacting to dairy via your BM. Soya will be similar.

You also need to rule out tongue tie and over supply because they can produce similar symptoms to cows milk intolerance.

Tongue tie - check for an upper lip tie. Lift his top lip up - is there a flap of skin connecting lip to the top gum? If quite thik, that's an upper lip tie and he will probably have a tongue tie too. Or get a BF counsellor to check his tongue.

Over supply - do you get engorged easily? Have a fast letdown? Does he
Choke or splutter on feeds?

Another final left field option is chronically over tired. Does he nap well? Although if intolerant then he won't sleep well anyway.

This is nonsense.

I think the fact it that for a baby to detect CMP in BM they have to be very sensitive. My DD has CMPI and it was only detected when we moved from BM to FF but the effect was almost immediate.

As has been mentioned earlier it can take a long time for dairy to leave your system. For a baby as sensitive as it sounds like yours is you may need to avoid all traces of dairy including whey and such like. It I also worth noting that many CMPI babies are also intolerant to soy.

I have a MN buddy who is BF her severely CMPI baby and is on a full exclusion diet. I could point her in this direction as she is a real wealth of knowledge on the subject.

Oh, sorry! The soy link has already been made.

There is also a difference between intolerance and allergy but the treatments at this stage are the same.

Best of luck - if it is an intolerance/allergy once the proteins leave your system you will have a different baby. When on nutramigen we saw a response within few days and complete return to happy relaxed baby within a fortnight.

Neocate here too, after 6 months of HELL. Baby weighed same at 6 months as at 3 .
Protein allergies come in many shapes and forms, but your baby needs to be referred to a paed asap.
PS tell your GP "unheard of" does not mean non-existent.

It's about 2-3% of all babies who are cows milk intolerant and of those a proportion will be sensitive enough to react to CMP via breastmilk, so probably less than 1% of babies but by no means unheard of.
It took 4m of screaming, refluxing, dropping centiles and misery for all of us to work out that MSPI (milk and soya protein intolerance) was the problem for my DS2, not helped by the GP who said it couldn't be anything I was eating. It took a fortnight off dairy and soya to see an improvement and about 6 weeks to see the extent of it. It takes several days to clear your system and milk of CMP, several days to clear LO's system, and then an unspecified amount of time to heal the damage done to the gut, so you are talking weeks.
Definitely persevere with it, don't use soya to replace dairy as 50% also react to soya, be totally strict on the dairy avoidance, not just the obvious stuff but also hidden dairy in processed foods , and watch your calcium intake, you need 1250mg a day (take 400mg calcium tabs if necessary).
Two things that were invaluable to me - this book and the Little Refluxers support site

My EBF DS had cow's milk and egg allergy, which became apparent when he was 6 weeks. It took about 2 weeks after me cutting out these things (on the advice of dermatology AND gastroenterology consultants who we were referred to as his reaction was so bad we ended up in A&E) to see a significant difference, which apparently is normal, as it takes quite a while for the proteins to fully clear your system and then your babies. GPs were very dismissive. The consultants were very dismissive of the GPs!

Hi there Pass asked me to pop by as you seem to be where I was 5 months ago.

My 7 month old DS has a cow's milk protein intolerance and issues with soy - he's BF. Your doctor is talking tosh honey.

I have had to cut all dairy and soy - even trace amounts, even products where they warn 'made in a factory which handles milk'. It took 6 weeks for it to leave my milk and his system and he was like a new baby. I'm not mad - we now see an NHS dietician, paediatrician and allergy specialist who all confirm it is CMPI and that this is a v real problem for some BF babies.

If you can keep on feeding your LO yourself, and are committed enough to cut out all dairy and soy - you'll be doing yourselves a favour come reintroduction time as the gentlest way to wean LO back on is to gradually reintroduce it to your diet.

I'm feeling a bit rough so off to bed but PM if you need to. Will pop by tomorrow too xxxx

This makes me so mad - having been through the whole failure to thrive thing too

I had to do all the research myself, HVs were clueless (suggested feeding lots of milky puddings to aid weight gain ffs). GP was luckily more helpful and admitted it wasn't something she knew a lot about and referred to paed who diagnosed CMPI straight away.

I'm sure CMPI is responsible for a lot of sickiness, reflux, and failure to thrive - it should be one of the first things that's looked at. But there seems to be a whole lot of ignorance surrounding it.

Good advice here on this thread OP, good luck with sorting it out soon.

Doc talking rubbish my friends little girl, is milk, lactose and egg. She had to fight tooth and nail for special milk for her and it took about 4 diff types of milk before they found 1 that suited. She couldn't bf as there is milk in so many foods she was hardly eating. If your going dairy free you'll need to check all what you eat. Most things contain milk. I'd see another doctor also. Hope this helps x

HelloBear - yes she took it ok after 3 days getting used to it. Saw an obvious improvement after a week

Sorry Debbie I disagree - I'm nearly six months into a dairy and soy free diet and you can eat well if dairy and soy free but it is harder. Maybe your pal ate a lot of preprepared foods and ready meals? As yes they're full of dairy and soy. All comfort junk foods are out but if you cook fresh (not ideal when time strapped with a wee one) you can eat well.

Don't be put off by horror stories! I'm now getting quite good at baking using vitalite and oat milk so I can have sweet treats. Most recipes can be adapted. My diet is lower in sat fat now so I'm losing 1-2 lb in weight a week but I had some baby weight to shift! There are lots of options and you won't go hungry.

If you want to remain BF do - it is much better long term for a CMPI baby as you can reintroduce dairy gradually through your diet which is much gentler on their tummies and BM is a natural antacid. You do however need a good calcium supplement.

Trying to find dairy, soy and egg free foods would be v difficult though!

Also disagree with Debbie I BF dairy and soya free for over a year. It is hard work to start with as you need to read labels on everything, but there are lots of good alternatives out there and it's very doable. If your LO is dairy/soy intolerant you are going to have to wean without those ingredients anyway, much easier if the whole family is eating the same.

Haven't got anything to add in terms of how to identify the allergy, but you mention that DS is fine when you visit medical people. Would it be helpful to have someone film you both at various points over a few weeks both to allow you to see if there are small changes and to point out exactly what he looks like during an episode to the paediatrician/GP.

Hope you manage to get it resolved soon.

Yes to what moon said - film a reflux attack to show the docs. All babies miraculously convalesce in doctors waiting rooms grrr so you always look like a liar! little buggers

DD (2yo) is severely intolerant to lactose. As a baby she had silent reflux, trapped wind, screaming in pain every night for over 18 months. Couldn't lie flat. She was breastfed until 22mo. No idea how we survived! We cut out lactose and she slept. Doctor insists it's a coincidence but no, she really has a problem with lactose and the difference when she's off it is staggering. I'd ignore doctor and try it yourselves. You'll need to wait 5 days or so to really see if it's working. Then if it does, wait a week or so then give her lactose again as a test. If it flares up, you know there is an intolerance.

And yes, we ended up filming the attacks because DD would cheer up in the car on the way to Out of Hours. We were fobbed off so many times until one fantastic doctor said 'Look, your daughter seems fine now but I know you wouldn't be sitting here with me at 2am if she had been fine earlier!'. All the other doctors had obviously assumed we loved sitting in hospitals with drunk casualties at silly o'clock.