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

[Bayliss1]

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

[LizzyDay]

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.

[gretagrape]

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]

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.

[Bayliss1]

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?!!

[gretagrape]

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!

[RawCoconutMacaroon]

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?

[JiltedJohnsJulie]

bashful its a pita isn't it

[BashfulBunny]

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]

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

[ButteryJam]

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]

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

[trixymalixy]

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

[JiltedJohnsJulie]

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

[ButteryJam]

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]

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.

[smallchestofdrawers]

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".

[lasseg]

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.

[gretagrape]

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

[Passmethecrisps]

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.

[dontlaugh]

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.

[seriouslysleepdeprived]

Try again

[seriouslysleepdeprived]

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 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.

[gretagrape]

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

[MoelFammau]

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.