Possible milk protein intolerance - very unhappy 9wo baby

[hrod]

Hi All,
I was reading a previous thread with interest as we're sitting here, new year's eve, with a very sad and sick-looking baby. I'm particularly interested if anyone experienced quite bad withdrawal symptoms when they started to cut out their dairy intake when they were BFing?

DD2 is 9 weeks old, and hasn't really been 100% since birth. She had a cold at 2 weeks old, which she was briefly hospitalised for (rapid weight loss, couldn't breathe easily etc). Since birth, she's had a persistent cough, scaly dry skin, and ever-worsening silent reflux and stomach pain. Over the last two days, the pain has got very bad, and she's screaming for much of the day. We hired a digital set of scales, and her weight has also dropped over the last 2 days. The doc (we live in Germany) is aware and ready if we think she needs medical attention.

Anyway, to cut a long story short, the doctor finally thought DD2 might be suffering from reflux as the cough wasn't shifting. I've had a niggling feeling that something else wasn't quite right for a long while now, and it's really reassuring that other mums have linked reflux with CMPI on previous threads. It was DH who noticed two nights ago that DD2 would start screaming not straight after the feed, but 40 mins later, with no clear sign of having refluxed. Since then, I've cut out all dairy from my diet (she's fully BF) and we've now put her on special CMP-free formula till the protein's out of my milk. But she keeps getting worse - she wants to sleep all the time, really struggles to settle, and cries with stomach pain. We did only start with the formula 6 hours ago, and I've read that it can take 5-7 days for symptoms to start to improve, but I'm surprised at how ill DD2 now looks... She looked fine yesterday morning, despite the crying.

Did anyone else experience something similar when they withdrew cow's milk protein? She doesn't have a fever/ diarrhoea/ vomiting - just is in pain. Any thoughts?

Thank you!!

P.S. I wrote this last night - she still hasn't improved! When she's not feeding or screaming, she's asleep on my chest - the only place she'll settle.

My DD had reflux (still has it a bit at 15months) and would scream for about an hour after every feed, and vomit at least 50% of her intake.

There was a bit of an improvement within a couple of days of me cutting dairy from my diet. However my DD didn't really make vast improvements until I stopped the breast completely and she went on to soya milk (formula - Wysoy to be exact). The screaming stopped! Though she still vomited a lot. I believe with my DD that her issue was baby reflux, and there were several different things that upset her. It would take too long to try eliminating everything from my diet to see what was upsetting her, and I didn't think it was fair on her to try this experiment. The formula worked for her, so we stuck to that from 3 months old.

By the way - she now drinks cows milk fine. in fact, she loves anything dairy (yogurts and cheese being her favourite!!)

Could she be coming down with something?

DS is has cmpa and is allergic to soy. Almost half of babies that have cmpa are allergic to soy as the proteins are similar.

I've been dairy and soy free for almost two years now a still BFing. I can notice it immediately if I slip up and it takes at least a week for his tummy to settle. He also gets the service shiners and looks awful for a few weeks after.

You may just need to give it time. It's early days still but has been worth it for us.

Hi both,

Thanks so much for writing back - it's so reassuring to hear that others have been through something similar. And sorry for not writing back sooner - I'd written a reply yesterday and then deleted it!

DD2's tummy seems to be a bit better after 4 days on the protein free formula (I'm still pumping - hoping to get her back on the breast tomorrow so that she's been CMP free for 5 days). But she's had this persistent cough since birth and that's now got worse. So we're keeping a very close eye on her. It's been so hard seeing her in so much pain, and she's still not exactly a happy baby. But no hours and hours of screaming - just some crying and discomfort.

A couple more questions...

• did either of you guys ever notice an adverse reaction to caffeine too? Did that affect the reflux? I haven't given that up, as it's the only thing that I can still enjoy!

• did your LO's poo very green poos when they'd had too much CMP? DD2's have been absolutely disgusting since we put her on formula, so it could just be that - or is she getting all the dairy stuff out of her system?? DH is currently changing her, and almost passing out!

• did either of your LO's have the test for acid in the oesophagus? They want to admit us to hospital for 24 hours to do this test and it'd be good to know how severe the reflux is, but I can't bear the thought of her being strapped down with a tube down her throat for such a long time.

That's it! Thanks so much, again.

Hi sorry for not responding before or on the other thread. My ds has suffered with silent reflux since a week or 2 old. He's never been off the vomiting variety which makes it harder to diagnose as most people like to tell you it's 'just' colic
. He was to start with a text book baby, latched on & fed well. Then quite quickly he began becoming increasingly unsettled during feeds, arching his back, screaming & crying but still wanting to feed. By about 5pm ish he'd start a frenzy of continuous screaming & crying, wanting to feed but becoming more & more distressed until eventually be conked out with exhaustion some time around 10pm. He would also wake within seconds of being put down flat on his back (except for when he conked out at night as he was just exhausted).

After trying all the colic remedies, that made no difference, he was put on infant gaviscon at 7.5 weeks. The difference was instant. He was then given ranitidine at 8 weeks & it was like having a different baby in the house. At 14 weeks we saw a lactation consultant who diagnosed & revised a posterior tongue tie. Tongue tie can also be an under lying cause / contributor to reflux. We also had a 4 week course of cranial osteopathy. He settled right down.

Any colds or teething though caused the reflux to flair.

Then we started solids at 6 months. He was badly constipated from the word go & the reflux was flairing much more frequently. We hit a crisis point at the end of November when for the umpteeth time he started waking every 30 - 40 minutes & only mummy & bf would do. Our hv suggested going dairy free to rule it out. Within a week the improvement was huge but I wasn't sure if that was the meds or being dairy free. He then got a cold & chest infection so all bets were off. It was only when he was better a couple of weeks later that day tried reintroducing dairy & the reflux started to flair so we cut it out & he started to settle again very quickly until a 'helpfull' aunty gave him a cheese & onion roll (of all bloody things!) at a party & we were up all night again & that really made us think it was more than just coincidence. Our hv has referred us to a paediatric dietician & the gp to a paediatric consultant, with blood tests being done before, to finally get this looked at properly. He will be 10 months old at the end of this month.

If I were you I would take all help & tests being offered. It sounds like your doctors are listening to you & taking you seriously & are prepared to investigate things further. I wish ours had as I've had 9 months of knocking on doors to get thud far.

The persistent cough can be a sign of reflux come the acid coming up will irritate things. The funny poo could be anyone of a number of things in my experience - new milk, teething, being poorly.

I don't think I've helped much with my epic podgy 7 (sorry) but I wanted you to know that you're not on your own & people out there do care. It can be an extremely lonely experience going through something like this.

DS had forest green nappies that had a very distinctive smell. He was also very farty and had a mucousy sounding chest, plus reflux of course.

Personally I would stick with BFing and avoid formula. DS had problems with neocate and became poorly when I introduced it. It contains soy lecithin which he has trouble with unfortunately.

Didn't have any problems with caffeine thankfully.

I'm sorry you are having such a tough time. Allergies suck.

And no, he didn't have the acid test. Going strictly dairy/soy free and ranitidine helped improve things.

Hi All,

Wanted to let you know how things are developing - and thanks again for sharing your experiences. It's a massive help.

DD2 was much, much better yesterday - for the first time in a week she could sit in her chair and enjoy being with us without being in pain. So this morning, we decided to put her back on the breast as I've been dairy-free for 5 days now. She drank from one breast - I really noticed the difference from the bottle. She choked at the let-down; took on gulps and gulps of air; and then started latching on and off repeatedly from 2/3rds of the way through the feed. But no screaming. I offered the 2nd breast but she didn't want any more. She then was happy for a while I had breakfast.

45 mins later (the magical 40 mins!), she started to grizzle a bit, so I offered the 2nd breast. She was hungry, started to drink, and latched off after the three gulps and screamed the house down. With the screaming, she refluxed really badly, fluid in all her airways etc. That lasted for 2 hours. DH had to take both LOs out (our older DD is only 20 months) as I just didn't know what to do with her.

OutnumberedByBlue2 - I'm really glad you mentioned the tongue tie, as my MIL thought she could feel one posterior, really far back (she's a midwife) but here in Germany they pretty much refuse to cut a tongue tie unless the baby can't move the tongue at all. I saw a paed about it and he said that there was nothing there to cut. I'm going to push to see s specialist for this, as they're considering that she has problems with her epiglottis/windpipe. Tongue tie seems like a more obvious explanation.

What I'm still stumped by is why she seems to only be able to take one breast or 70 mls from the bottle at a time. It's not very much for a 2 MO. Is this because of reflux? Or tongue tie? Or something else? Have any of you guys had something similar with your LOs?

And I'm going to carry on dairy-free, as I'm sure that had been contributing to all of this.

And thanks again! happy Saturday...

Hi hrod - when DD was on the breast (and we had the continuous screaming) she had what I can only describe as olive green mousse as her poo (think chocolate mousse, but pistachio coloured!!) - when she was put on to soy formula mixed with gaviscon she had much more solid and normal looking nappies. However, we only had her on gaviscon for 1 month, and her nappies stayed normal until we weaned her.

The way I understand it (as a refluxer myself) little and often is the key. If you think about it, your DD's stomach is only the size of her fist (someone correct me if I'm wrong) - it's quite possible that 70ml's is about all she can manage before the acid is pushed up into her windpipe? From my experience, I think medicine may be the key here. Gaviscon / ranitadine. I'm on omeprazole, but not sure if they have infant doses of that.

We didn't take DD for tests. We did go into paediatric ward with it, but they didn't do anything "apparently they observed" and they didn't suggest any tests for us. Just for me to cut out all dairy, and if things didn't improve within a few weeks, to see GP about gaviscon.

I started on formula as I needed to get gaviscon in her somehow and I had trouble pumping. At first I just gave her enough formula to have the gaviscon twice a day, but she screamed so much with the breast I just didn't have the heart to keep forcing the issue (even when I did start to pump better, I then couldn't keep up with her as I had begun to dry up).
You have to experiment and see what works for you and your baby in regards to breast or forumla feeding. Try keeping a food diary, and eat as little processed food as possible. It's hard to pinpoint food allergies in adults, let alone babies!! Caffeine could be the issue, but I didn't drink much (if any) when I was breast feeding. (I drink decaf tea anyway, so it would have just been the odd coke). It could be gluten? I personally have issues with that.

Hope it gets sorted asap - really push to see as many specialists as it takes until you are happy!!

Hello hrod, glad your baby is feeling a bit better.

It sounds like there are various different things are going on... how stressful for you!

It's a good point about your baby's tummy only being about the size of her fist. Babies this age tend to feed little and often (especially breastfed babies, as breastmilk only takes about 20 minutes to digest).

Posterior tongue tie is definitely a possibility. Both my boys have this (and the elder also has severe allergies, which complicated the issue no end). I know from bitter personal experience that posterior tongue tie can make babies more difficult to feed, and significantly windier - it's harder for them to suck so their mouths get tired before they have really finished, and they may be hungry again very quickly. Also, there is a danger that they might miss out on the fatty, nutrient-rich milk you make at the end of a feed, so maybe keep offering the same breast if your baby is hungry again within half an hour or so. However, it doesn't necessarily need snipping. As babies get older, they get stronger and better at latching on, and the problem sort of resolves itself in most cases.

(As a breastfeeding supporter, I am aware that there is a bit of a 'fashion' for having all tongue ties snipped professionally at the moment.... apparently, in olden days, midwives used to keep one fingernail specially sharpened, and sweep this under babies' tongues quite routinely.)

Have you tried feeding your baby in an upright position? That can help quite a lot with swallowing air and also with reflux. If you can master feeding your baby upright in a wrap sling, this will change your life! - you can get on with all sorts of other things while feeding your baby.

Keeping a food diary is a very good idea. That can help you pinpoint any problem foods.

Keep us posted. Hope your baby continues to improve.

Hi there! I think you're right about the capacity question: that that's the amount she can take before it starts pushing up from her stomach. It's a shame, because she's always hungry after only 70mls, but that seems to be the max at one sitting. She can take a bit more with BM - we're on about 100-120mls per feed which is pretty good.

And again, it's useful to hear another mum who had to cut out dairy in addition to treating the reflux. I'll keep on going with it, as she doesn't seem to have stomach pain since going back onto BM - just loads of wind. Speaking of which - can anyone recommend some good bottles where they don't take as much wind? We have avent, and she just gulps down the air!

The good news is we've had a much more settled morning with DD2 - she's been taking BM from the bottle (and for anyone who reads this who needs to pump a lot: the only pump that's ever worked for me is the medela symphony. It's amazing). It's really upsetting the way she can't handle the breast at all - ColdFeetWarmHeart - did you ever work out why it was with your LO? But for now, I'll just stay strapped to the pump. it's only a bit more time consuming than preparing formula anyway.

I'll let you know what happens at the hospital on Wednesday - they're going to look inside her throat with a camera (they're thorough here in Germany!), and I'm really hoping they'll take the tongue tie question seriously. I have a feeling that if I stayed off dairy and she had her tongue tie snipped, we'd have a different baby.

Hrod - I didn't push for tests etc, so I never got a definitive answer as to what was wrong. I was just happy that we found a way for her to be a happier baby.
I feel though, in my DD's case, her main issue was acid reflux. Something in my diet was aggravating that to cause the severe pain / colicy symptoms. I think we had issues with her taking the breast after being on bottles for a while mainly because she was a bit lazy! Babies have to work harder to suck from the breast than from a bottle. I had introduced an expressed bottle once a week from birth so that she could take a bottle if needed, but not get too used to it. but I think when I had to start giving her a bottle twice a day (when she was on 4-5 a day), she got used to the ease of the bottle, and just got a little rebellious! She may also have been struggling as my supply had dropped a bit at this point.

I hope your DD's better soon x

I suspected CMPI with my DS, he was exactly how you describe. I have CMPI so I thought it was the likely culprit.

However it turned out to be tongue tie and upper lip tie.

Would really recommend getting your dd checked and talking all of this through with a BFC

Hi everyone,

Well, we went to the hospital on Tuesday, to get DD2's throat and mouth looked at. The put a camera up her nose and fed it into her mouth to see what was going on - I'm so glad DH wasn't there as it was horrible to watch. They found that her epiglottis, which closes when she drinks, is a bit 'steep' and the vocal chords a little bit tight... nothing abnormal just a bit on the tight side. So they think that the epiglottis might not fully close, allowing some air to get into her stomach and milk to irritate her windpipe. That would explain the chronic cough.

They said that they could cut the vocal chords a little to loosen everything with laser surgery, but it requires general anaesthetic, so obviously we won't want to go down that road unless she's really unwell. And at the moment, she's gaining weight well (5.2kg at 2 months) and it's just the cough and the near-constant crying which is the trouble.

HOWEVER I'm still convinced that she has a tongue tie. She clicks her tongue when feeding, chokes, takes loads of air... The sounds that she makes surely can't be down to the flap at the back...? And we've tried these ergonomic teats for the bottle by NUK - they're shaped more like the nipple and don't let so much air get into baby's mouth. And she literally can't drink from them - just sucks and nothing comes out. This makes me think that she struggles to push her tongue upward sufficiently. I had a look at this website cwgenna.com/quickhelp.html and the things they suggest to check for there make me think that she an anterior tongue tie. E.g. her tongue doesn't go up to the roof of her mouth when she cries.

But the doctors all say there's nothing and although I really pushed for them to take it seriously on Tuesday, the firstly said she didn't have one, and secondly said that to snip it would require general anaesthetic. Surely not, even for a posterior one? Did any of your LO's have to have a general?? DD1 had hers snipped in England and although it was more anterior, it took 2 secs with no anaesthetic.

I feel a bit cornered: DD2 is unhappy so so much of the time - the only quality time I get with DD1 is when we're out walking so that DD2 can sleep. It's not a happy place for any of us - especially as I'm pumping BM 8 times a day! I'm thinking about whether I can come back to England to get it done... Just not sure what to do next. The Dr. is going to prescribe some reflux med on a very low dose, but I'm not convinved it's going to improve things much.

Thanks for all your comments as ever - it's really helping us to figure out what to do about all of this!

There is no way that snipping a tongue tie needs a general anaesthetic

Maybe the old fashioned teats would suit you better? You know, the long thin ones that deliver milk straight into the baby's mouth with hardly any need to suck at all. They'renot generally recommended, partly because they make babies a bit lazy and it's easier to overfeed them with formula, but your situation is a bit different. If your baby is really struggling with the shape of the breast, and you'd rather keep on pumping, then a non-breast shaped teat could be worth a try if you haven't already.

Or you could try cup feeding, or using one of those 5ml medicine syringes.

Not sure how feasible coming back to the uk to have a possible tongue tie snipped might be, but it does sound like the feeding support you have had is pretty rubbish. .. is there a decent breastfeeding network where you are? (The uk breastfeeding network I am involved in looks at all aspects of infant feeding and can give information to mums who want to use bottles as well! !)

Really hope you can find some solutions soon - sounds very difficult for you at the moment.