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

(50 Posts)
gretagrape Sun 19-May-13 15:45:20

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

Alexa007 Sun 19-May-13 17:25:16

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?

Alexa007 Sun 19-May-13 17:25:46

We are also on the same medication!

HelloBear Sun 19-May-13 18:56:19

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!

HelloBear Sun 19-May-13 18:58:29

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.

AnitaBlake Sun 19-May-13 19:57:43

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.

Passmethecrisps Sun 19-May-13 20:02:27

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.

Passmethecrisps Sun 19-May-13 20:05:14

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.

dontlaugh Sun 19-May-13 20:08:40

Neocate here too, after 6 months of HELL. Baby weighed same at 6 months as at 3 sad.
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.

Bakingtins Sun 19-May-13 20:08:49

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

savoirfaire Sun 19-May-13 21:16:32

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!

YellowWellies Sun 19-May-13 21:21:25

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

LizzyDay Sun 19-May-13 21:38:42

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

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.

debbie1412 Sun 19-May-13 23:01:26

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

MiaowTheCat Sun 19-May-13 23:04:43

Even straightforward ff when you don't have to wait for it to clear out of two people's systems it's taken a good week to start to see an improvement in my youngest - it's only this weekend (after I hit breaking point and just sat there with tears streaming down my face for hours this week) that we've seen the first real improvements with her- the terrible skin rash has just suddenly started to clear almost overnight.

I think GPS go into the neurotic mum fob-off far too easily where feeding and possible allergy issues are concerned.

Alexa007 Mon 20-May-13 11:05:32

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

YellowWellies Mon 20-May-13 12:49:36

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.

YellowWellies Mon 20-May-13 13:18:38

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

Bakingtins Mon 20-May-13 13:24:23

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.

YellowWellies Mon 20-May-13 14:52:54

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 smile

MoelFammau Mon 20-May-13 16:07:54

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.

MoelFammau Mon 20-May-13 16:10:17

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.

gretagrape Mon 20-May-13 17:50:35

Hi all, sorry I haven't replied to anyone individually, bad night last night so bit tired! We spoke to paedeatrician that we saw last week and he has said to perservere for another week to see if any improvement - fits in with what you are all saying re timescales. I mentioned to him about avoiding soya and he didn't know anything about that but I'm avoiding it anyway. Luckily I have a friend who has tons of allergies (don't really mean 'luckily' but you know what I mean) so she has given me some advice about what to avoid and what supplements might be worth a shot, and my nephew has CMPI so my sis-in-law can give me tips on baking if this is the way we are going.
He did have a tongue tie which was snipped when he was 2 weeks and I think there was also an issue with over-supply as he used to spill the milk out everywhere - his technique is frankly rubbish partly due to him not being able to breathe through his nose so there is never a proper 'seal'.
He doesn't 'nap' in the day at all apart from the odd 20 mins propped upright on me - the only time he sleeps is from around 5pm until 5am (not all in one go, but between those feeds!) so I know he is over-tired but as soon as he falls asleep 5 mins later he'll get a spasm of pain and wake up crying.
We have started filming him - it was that (along with the rash on his chest) that swayed the paed to thinking it was CMPI as we showed him a video of LO breathing like a 90 year old who smokes 40 a day.
GP made me feel like s**t so thank you all so much for making me realise I'm not on my own and it IS a reality - I even mentioned to him that my nephew has severe CMPI and nut allergy and he didn't think that was relevant! What I hate is that unless you are really forceful and a total pain in the arse then the NHS just don't give you the time of day.
Hopefully based on what you are all saying we will start to see some sort of change in a week or so, otherwise it;s back to the drawing board.
x

seriouslysleepdeprived Mon 20-May-13 18:19:32

kellymom has some good info on this.

DS is allergic to dairy and soy a d I've BF for over a year so far with no intention of stopping smile I'm also a coeliac and gluten free as well...it's totally doable. You need to be strict with it though.

We see Dr. Thomson who is a specialist gastro pead in this area. [[ http://www.paediatricgastroenterologist.co.uk/gut-disorders/allergic-gut-problems/ His website]] has some good info on it, including the soy/CMPI rates.

It's hard, especially with the crap sleep but does get easier.

seriouslysleepdeprived Mon 20-May-13 21:48:38
dontlaugh Mon 20-May-13 22:05:33

That is great progress grape, hopefully it will get better. I hear you about the tiredness - I slept no more than 2 hours at a time for 6 months. I utterly completely support b'feeding and it is possible with cmpi babies, however I've 2 other children and it was the closest I've ever come to a psychiatric breakdown, trying to keep it all together, a baby in hospital i was still desperately trying to feed and 2 at home i was also trying to organise care for. I'm not saying this flippantly, it's the truth. My point is, I did feel bad initially about switching to specialist formula but in the end I quite honestly had to, as was unable to have a coherent conversation with anyone due to tiredness. Baby was still feeding every hour/2 hours, dropping centiles, and I had oversupply. He did have other issues but with hindsight all caused by milk allergy. I'm trying to make you feel better, no matter what choices you make, if that makes sense.

Passmethecrisps Mon 20-May-13 22:11:08

I know what you are saying don't. It sounds like you had a hell of a time.

Dealing with issues like reflux and CMPI are really hard.

gretagrape Sun 01-Sep-13 08:55:35

Hi all. I wanted to write an update because I was in such a low place when I originally posted and was so grateful for all your replies.

My son is now 5mo and is a happy, content (apart from when I want him to nap!), very smiley baby.

I remained dairy,soya and egg free for about 10 weeks and we did see major improvements but in the end we moved to Neocate as there still seemed to be reactions to things that we could never work out. Bizarrely he has since developed really bad eczema but the hospital think it's a reaction to his 4-month booster as that co-incided with starting on the Neocate.

Starting on solids this month with advice from the dietician then off to the allergy clinic as well, so at least we are in the system for the help we need.

Thanks again all.
x

lasseg Mon 02-Sep-13 20:22:41

I don't know of any solutions for milk allergy not already posted, but as far as general discomfort goes, a couple different things worked really well for my daughter for general stomach upset as well as gassiness.

First one is putting a peppermint candy (either lozenge or bit of candy cane) in an 8oz. bottle of warm water. Shake it up until some of the candy has dissolved (the stripes should start to disappear), then let baby have 2-4 oz at a time. That will help with general stomach pain and nausea, so there should be a little less spitting up and crying due to discomfort.

The other one that worked great for my DD was geared more toward gas and liquid stools (worked when she had salmonella, too). Basically you make rice with twice as much water as the recipe calls for, but simmer it for the normal time in the instructions.

Then you let the excess liquid cool enough to not burn baby's mouth, and give them a few ounces of that in a bottle. It doesn't taste great, so don't be surprised if baby doesn't seem too enamored of it, but if you can get a few ounces down them, it will help gas pain and loose bowels a LOT.

smallchestofdrawers Mon 02-Sep-13 20:54:22

Haven't read all of the posts but I bf and my son had (still has) a dairy allergy (and egg and nuts but he has grown out of the nut allergy). I thought he was allergic from a very early age and he had very bad eczema but was very definitely fobbed off as a precious mother by dermatology clinic at hospital when I mentioned allergies and was told eczema was not caused by dietary allergies.

Couldn't get anyone to take me seriously until he ended up in A and E after blowing up like a balloon when my mother gave him some lasagne (he looked terrible but was fine after he had some anti histamine).

I now traipse up to a different hospital department every year for his skin prick tests and was told one year "of course [ds'] eczema was caused by his allergies-he could have been saved a lot of discomfort if he had been tested earlier".

JiltedJohnsJulie Mon 02-Sep-13 22:33:29

Haven't read all of the posts either. Your DS sounds exactly like my DS (I feel your pain) but with him it wasn't CMPI it was tongue tie. Have a read of this and see what you think.

ButteryJam Mon 02-Sep-13 23:00:48

OP, your 1st post is exactly like you are describing my DD! I've just put my screaming DD to bed and in the whole day she's taken in total less than an hours naps!

I've been on dairy free for two weeks and seen no difference. Peadetrician has prescribed lomperazole, so I've started that today, but have no idea if it'll work. Any advice you can share?

JiltedJohnsJulie Mon 02-Sep-13 23:08:47

Buttery has your Lo been checked for tt too? The symptoms can be very similar to CMPI.

trixymalixy Mon 02-Sep-13 23:11:01

My GP also insisted that it was impossible for my DS to be reacting to dairy through my breast milk. He was wrong.

JiltedJohnsJulie Mon 02-Sep-13 23:18:02

trixy that's shocking. You should complain and suggest some retraining. Alternatively, just print this information off and make sure she/he gets it smile

ButteryJam Mon 02-Sep-13 23:19:55

Jilted, she's had both TT and LT removed, but I've been told her TT may have grown back. My DH can't understand how her fussiness could relate to a very slight posterior TT ...

JiltedJohnsJulie Mon 02-Sep-13 23:26:24

Oh god, it so can. We had months of hell, just wish I'd known about Mn then. Are you getting any RL help?

BashfulBunny Tue 03-Sep-13 00:42:27

Buttery tell your dh to swallow while paying attention to what his tongue does. It needs to be able to make a sort of wave-like rolling motion to transfer food/drink from front to back. Then imagine it is pinned down in the middle. No wonder a PTT causes fussing...

JJJ suggested I looked into TT for my (now 1 yo) ds due to fussing, wind and not sleeping and it turns out he has a PTT and an upper lip tie. It's definitely worth getting it checked by someone knowledgeable to see if either has grown back or was done fully in the first place. Both seem to be pretty common.

Good luck

JiltedJohnsJulie Tue 03-Sep-13 07:23:00

bashful its a pita isn't it smile

RawCoconutMacaroon Tue 03-Sep-13 07:39:04

One the baby is weaned, you need to be a label hawk- powdered milk (for example, in chocolate buttons), seems to affect my toddler DS much more than the equivalent amount of fresh milk. With a small amount of powdered milk causing significant skin breakouts, gut pain, foul runny poo and "scalded" nappy rash.

I wonder if the actual drying process changes the proteins in some way?

gretagrape Wed 04-Sep-13 13:09:13

Buttery - it took about 4 weeks for us to see a slight improvement (the protein takes approx 2 weeks to leave your system and so then another 2 weeks to leave baby's) and really it was at least 6 weeks before we could see significant improvements.
The only advice I can give you is to really keep an eye on what you are eating to ensure you are getting all the nutrients you need - I ended up being totally exhausted by missing out on dairy, despite eating really healthily, which made it even harder for me to cope with my son while he was still very unsettled.
You need to take a calcium supplement really because although you can get calcium from various non-animal sources, the body doesn't process them as efficiently as animal proteins, and over-eating some veg-based proteins can actually cause the body to absorb even less of it. Also make sure the supplement contains Vitamin D as the body needs that to absorb the calcium.
I also found I needed to avoid 'free-from' treats altogether because it seemed like by taking the dairy out of a product it becomes loaded with sugar instead so my blood sugar levels were all over the place making me really erratic.

JJJ - yes, he had TT as well - snipped at 2 weeks, which we thought at the time would solve all his problems - little did we know!

Bayliss1 Fri 06-Sep-13 11:35:03

I had a similar experience with my now 5 month old. I tried cutting out dairy from my diet but made no difference with my lo. She went in to Nutrumegen which is nasty nasty formula! My lo hated it and the screaming then continued due to her being so hungry! She is now on Aptamil Comfort which has reduced lactose. She does still get tummy ache but likes the milk so I'm split which way to go! Do I give her milk she doesn't like so she doesn't get tummy ache but is starving or give her milk she likes but that causes tummy ache?!! hmm

LizzyDay Fri 06-Sep-13 12:27:57

Have you tried titrating (mixing a bit of Nutramigen in with a larger amount of the milk she'll take, then gradually increasing the quantity of Nutramigen as she gets used to the taste)?

This is what my paed advised, though you should probably check with yours that it's appropriate with the mix you've got (I can't see why it wouldn't be though). It's hard to give them formula that you know tastes grim, but it's only a more 'broken down' version of normal formula, and is better for them if it means no more pain and digestive issues. smile

gretagrape Fri 06-Sep-13 13:57:52

Bayliss - is your baby lactose intolerant or allergic to cow's milk protein? It's a crucial difference.

If they are lactose intolerant then cutting out dairy wouldn't have made any difference anyway as there is lactose in breast milk so the only answer for that is to go onto a lactose-free formula.

If they are allergic to the protein in cow's milk, then Nutramigen (and maybe Aptamil but don't know anything about it to be honest) might not be right for them anyway as it still contains cow's milk protein, it's just that it's broken down into tiny parts so the baby's system can cope with it.

If the allergy is severe though, they would need to go onto an amino-acid based formula such as Neocate as that doesn't contain ANY animal protein.

I wouldn't advise giving a milk that gives them tummy aches just because they like it - if it's obviously not agreeing with them it's unfair to continue. We had a tough time getting our son onto Neocate (it took 14 hours of him refusing, screaming and falling asleep exhausted) but once he'd taken it once he didn't look back and now he is perfectly happy and guzzles the whole lot every time.

LizzyDay Fri 06-Sep-13 16:00:22

Bayliss - yes the two formulas you have are for different conditions - were you prescribed the Nutramigen by a doctor? Nutramigen is for cow's milk protein allergy, whereas the Aptimil Comfort is for lactose intolerance which is different.

Bayliss1 Wed 11-Sep-13 14:48:33

Yes the doctor prescribed the Nutrimegen on recommendation from my HV.

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