Babies with milk intollerence - symptoms?

[whensmydayoff]

Not allergy but intollerence.

Im always on about my DD's reflux so sorry if you've read one of my 20 threads!!

It's just not getting much better, infact it has taken a turn for the worse again.

She is 12 weeks, on Omeprazole and Domperidone and awaiting a referral to clinic at hospital - will take ages.

I was struggling to feed her in the evenings so I resorted myself to giving her a bottle of formula at 11pm everynight so I could see my bed before 3am (she can take a bottle calmly but arches and pulls off the breast).

Anyway, this was for about 4-5 nights and first she was constipated then had diarrhea twice. I thought maybe just the change.

I keep hearing people ask if she has a milk intollerence and im not sure she wouldn't be worse.

Her reflux symptoms are

Arching and pulling off the breast struggling to get a feed.

Screaming for long periods after a feed.

Can't lie her flat, has to sleep on tummy.

Windy.

Sick if I move her or put her down after a feed (but not overly, it's more silent reflux)

Coughing and gargling stuff in her throat

Constant hiccups

She took the formula no problem and settled well after but by night 3 she was hysterical and only took 60 mls. Thought it was becuase she was suddenly constipated with it and next day she had two absolutely rotten nappies that were jam packed and leaking.

Is this just a normal reaction to sudden change in diet or not?

Paed thought I was wasting my time when I put myself on a dairy free diet for 8 days so I just stopped - hadn't seen any improvement up to then anyway.

Have you tried Goat's formula milk?

My child is older now and I breast fed him for 11 months, but these symptoms were evident from when I started to wean him.

After trying many formulas, including soya, I found the goat's milk formula worked a treat. We used a product called Nanny Care Goats Formula, bought at Waitrose.

He was on this from 6 months old to 2 years old, when I transferred him to normal goats milk.

your DD symptoms sound much like my DDs were - i did the exact same as you - ended up on formula but she just got worse. she also had "seedy" stools - looked just like tomato seeds. she screamed and screamed when feeding - it was awful as she was hungry and wanted to feed but then would writhe in pain, and scream blue murder. her feeding was so erratic she ended up in hospital where the consultant wouldnt hear of her being intolerant to milk - he said it was rare. he was an arse - she got a referral in the end to a paed who knew about allergies who confirmed it, but by this time id weaned her (far too early really but i couldnt do anything else) we had unwittingly de sensitised her by reintroducing dairy back bit by little tiny bit.

id ask to see another paed. id also try and keep the BF if you feel you can - my DD just got worse and worse on the formula, after initially seeming better on it. i feel it was a mistake for us personally but you may find differently. she ended up on soya milk but never really took to that either - maybe try the Goats formula if you can find that if you cannot BF.
good luck - i remember it well! you have my sympathies.

vicar Thats interesting, she has those nappies sometimes too - like undigested milk curdled like seeds.

Oh god, imagine I had her on all that strong medication for reflux and it's actually milk Intollerence. Did anyone ever suggest reflux to you?

So you mean to say she just grew out of it and putting her onto dairy again kind of solved the problem in the end?

Did she end up with any other allergies as a result - as in asthma, eczema etc? Just my DH has both and I hope ive not triggered any with the formula.

Si I take it if I cut out dairy then thats better than the special formulas or is it the other way round?

hi -

no one ever suggested reflux but she is now 12. she did grow out of it - but i weaned her way way too early out of desperation - i had no help - the hospital at first thought i was obsessing and wouldnt let me feed her for 24 hours (i think they thought it was me!)

made no odds - she did the same thing with the nurses.

so we were sent home to get on with it.

she does have mild asthma, but severe peanut allergy, and seems mildly intolerant to certain other things - as in they make her lips a bit red and swollen but nothing more - but its a subtle reaction so hard to narrow it down, we thought, it was ketchup for a while but seems not...i always have piriton in and she carries an epipen for the peanut allergy, which is a proper allergy, but luckily she doesnt seem to react with any cakes or things the may have come into contact or made in a not nut free enviroment. the peanut thing only came to light when she was 4.

anyway - i took her off the breast, then off formula, then onto soya, then slowly re introduced dairy products after she was weaned. it worked ok, but i wish we hadnt been left to flounder, god knows how we survived it!

id ask to see someone who knows their stuff where intolerances and allergies are concerned. my DD was 8 months by the time we got to see someone like that and by then she was ok. (as in not a screaming red ball of pain and fury!!)

weaning her early was all i could do. she appears to have not suffered for it.

when i say weaned early i mean early. she wasnt eating, so i began her on tiny amounts of baby rice mixed with boiled water at about 12 weeks. im sure this goes against the grain now, but maybe more products that dont contain milk are available or try the goats milk, or try to stick to the breast but cut out dairy for yourself, give it chance though. i to this day - wish id not given up BF, i had a stupid health visitor who kept telling me to UP my butter fat intake and drink loads of milk!!! yeah...exactly.

Ugh - HV are a nightmare!

Dont beat yourself up about BF. I bet your DD would have been much the same.

I had my DS 3.1 weeks early. I blammed both my weight on him being early and the fact it was a c-section for his reflux.

I had placenta previa and was to just rest for whole PG. I was usually very active so between that and boredum I piled on 3.5 stone.

This time I watched my weight, only put on 2 stone and excercised during PG....

guess what - she was 3.1 weeks early and has reflux!

I bet if you could do it all again it would have the same outcome wether you BF or not!

Oh and my friend stopped BF her son after 2 weeks. He had terrible skin. Never stopped beating herself up.

She is still BF her DD at 9 months and.....she has terrible skin.

My DS2 suffered with various intolerances, he was FTT (faliure to thrive) a very thin little baby. He cried constantly, we gave up putting him to bed at bed time and kept him in his bouncer downstairs so when he woke with a start and started screaming in pain we could calm him quickly. After a bottle he would arch his back and scream for about half an hour. We had those seedy nappies too. When he was six months old we paid to see a paediatrician who was a specialist in food intolerance, and it was the best �£60 I have ever spent. He took us very seriously (DS2 was on the 0.9th centile at this point).

We took lactose out of his diet (no goats milk either as all milk contains lactose, as do various crisps, chips really anything you haven't made from scratch has it hidden under various names). Initially this didn't work so after a month we removed all soya products from his diet too ( 10% of babies who are lactose intolerant can't have soya either, ironic when this is the main thing you can substite for milk products!) This worked like a charm and he stopped crying the next day and was the best baby ever from this point on.

I think it's vital that anything to change your babies diet is done under a good paediatrician, he was closely monitored and had a milk formula that was pescription only. When he got to two he was gradualy re-introduced to foods under medical supervision and he have very little problems now.

Sorry, very long post but I'm quite passionate about this, there is so much advice out there that could be damaging, nutrition is so important! And our consultant was very good about all his tests being NHS so we didin't spend too much money.

Hi, I'm sorry to hear you are still struggling.

wrt: Si I take it if I cut out dairy then thats better than the special formulas or is it the other way round?

I think it's better as in b/feeding is better for babies than FF. But if your question is about managing CMP intolerance, I think you should get the same result. If you were to cut dairy out of your diet, you'd have to be sure you have cut it out completely. Read labels, avoid soya as well. You'd need to be completely dairy free for at least 2 weeks to see effects, I am told.

With formula, I think you should see the results a bit quicker. (In our case it was 2 or 3 days) You can get the formula without prescription if you're prepared to pay for it to try it out. We paid about £7 (I think) for a small tin of Nutramigen.

hi
my sister in law had the same issue but the poor baby had blood in his stools and also in his vomit. The hospital put it down to milk intolerance and prescribed nutrimigen which tastes awful and he wouldn't even take an ounce of the stuff.....what really helped was the goats milk he was still sick on it but the screaming and being uncomfortable stopped.
its called nannys goats milk. I really hope she gets better.

Oh no I'm sorry to hear about all this you're going through OP!

Can you breastfeed? It's still very early, there are ways to bring back your milk supply, that could be the cure all.

Oh dear MWMO, how tough and upsetting this is for you and your dd.

But there are things you can do to help. Firstly, have you seen - in person - any breastfeeding supporters from any of the breastfeeding charitities? Here a little way down on the right hand side, under Useful Links.

Paeds are very good with illness, not so good with normal behaviour. And breastfeeding, together with the problems that you can experiences with it, is normal behaviour.

A lot of what you describe sounds to me like a problem with attachment, and possibly over-active letdown. Reflux, too. Some face-to-face support with a trained breastfeeding supporter could be very helfpul for you.

As for trying a dairy-free diet for yourself - that seems to me a very good idea. It can take 3w or more to see a difference in your baby, and the effect of yor own diet can be obscured by the changes in her diet or medication, so it's not immediately clear. But it's not going to do you any harm to go dairy-free for a couple of months, especially if you make sure to eat other calcium-rich foods.

Thanks everyone.

I am breast feeding and it is fine from attachment point of view. I fed my DS for 5 months too so me and DD were off to a succesful flying start.

5 weeks into it though it all started to really kick off. It's the pain that causes the screaming and I thought here we go again, reflux like my DS. When my DS was put on Meds he changes quickly to a happy baby.

DD has been on them for 5 weeks now and although there is an improvement, she still screams and I still struggle to feed her at times.

It was her reaction to the odd bottle of formula that had me thinking intollerence.

Hi Duende how do I go about paying for a paed - id pay anything!

Reflux and milk intolerance often go hand in hand, so it may well be that she has both (my dd did, my ds just has/had milk intolerance, although we initially thought he might have reflux too).

I would ditch the formula, or replace it with nutramigen or neocate.

Only around 20% of children who cannot tolerate cows' milk protein will be ok with goats' milk, as the proteins are very similar, so I would def avoid that too (and it's supposed to be illegal to sell it here now too, although lots of people still seem to be getting hold of it).
Soya also unsuitable formula for under 2 years.

You should cut out all dairy and soya from your diet for a minimum of 2 weeks, and continue to breastfeed. If she improves from that, then you can try re-introducing soya (it's actually harder to avoid than dairy), and check whether she's still ok. someone mentioned 10% of milk intolerant babies having a problem with soya too, but I've always read that it's more like 30% (and too much exposure to soya can sensitise them to it even if they didn't have a problem to start with).

How is her behaviour between feeds? My dd was irritable absolutely the whole time, and wouldn't sleep at all, which the paed we saw said is a fairly common symptom.

Two of mine had reflux, and they are both dairy intolerant. I did not make the connection though until they were 18m and 5y. I was still feeding the 18mo, and cutting out dairy from both our diets made a difference to him.

Everything you describe is classic reflux. The rotten nappies are classic dairy intolerance.

But the arching and pulling off the breast when feeding, especially when you say she takes the bottle calmly, do make it sound like there may be a problem with the feeding. And problems with feeding are usually due to either attachment or overactive letdown. Which is why I suggested seeing a breastfeeding supporter.

I found myself relearning to breastfeed with each of my three dc, and each had a very different feeding 'style'.

BTW, Can'tSleepWon'tSleep, it's not illegal to sell goatsmilk formula, merely to sell it as a breastmilk substitute. You can still find it with the other manufactured milks, it's called Nanny, but it is presented as a follow-on milk of some sort. Ds1 was mix-fed with it from 2w, before it was re-marketed, and it gives truly pongy (tho normal) nappies.

DS was admitted to Children's Hospital where he was nil by mouth until they worked out what was making him ill, and it was cow milk protein severe intolerance (he was also off the chart for weight). One of the Paediatricians said that in reviewing his red book that it was likely his intolerance started around 3 weeks old

Now at 2, he is still intolerant to cow milk protein and soya and he's under a Gastroenterologist, dietician and another consultant.

Could you ask for a referral to the gastro team?

OP- sorry haven't read all the thread. I have a friend who disscovered her DS was allergic to certain milk proteins becuase of a cream she put on his face (by AVENT). That was when the penny dropped. Tried lots of things beforehand, but this was really what 'solved' the mystery and got him taken seriously by professionals.

Good luck.

ilovemydog Sorry to hear that what a shame for both of you.

When you say off the chart do you mean low weight?

Probably, my DD over feeds for comfort and is heading up the chart although with feeds becoming increasingly difficult that may change.

prettycandles which of your 3 had reflux? As in from oldest to youngest. Im just curious because I thought after having 2 with reflux a third was out of the question. Id love to see what it was like to have a baby without, would be a doddle after this!

How do they find out if they are intolerent then? Is it a test? If it's just an elimination diet Id be a bit in the dark because I wouldn't know if it was the medication or the diet. There's no way im taking her of meds as it has improved things a great deal, id be too scared to.

I have started the diet yesterday - how hard!
Yesterday I ate an oakcake then discovered skimmed milk powder was in it. Today I grabbed a bag of quavers from a shop to get change and I was near fainting with hunger, whilst eating them I discovered the same.
Been to SAinsbury's tonight and bought loads of FreeFrom stuff.

cantsleep Yes she is irratable most of the time. Very very draining.

Id love to ditch the formula completely and I have the normal stuff after just a few nights of it but I just can't feed her at night and I cant express enough, she's such a big feeder.
She has drank my freezer supply and doesn't let up enough for me to build one up again!

I know my DS only had reflux on thinking back but I have a feeling there's more wit DD.

Well the elimination diet will mean nothing if she's still having the formula, so you'll need to get hold of one of the hypoallergenic ones mentioned and only count the 2 weeks from then I'm afraid.

My dd comfort fed too, and soared up the charts, which is why we struggled to get our GP to take us seriously. Fortunately our HV was very supportive.

I have nairns oatcakes and they are dairy free (not the cheese ones obv!). Plain crisps are usually fine (not those pom bears kids ones though!), but be wary of other flavours - many do contain dairy. Even some processed ham contains dairy!!! You do soon get used to it though, and it seems much easier once you have found a few things that you can snack on.

For an intolerance there is no reliable test, although some babies will get a rash if you put milk directly on them - our paed asked me to put some cows milk directly on dd's lips and see what happened. She didn't get a rash from it though (ds would have done). If she gets better with elimiation and meds then you can test which it is by re-introducing dairy and seeing if she gets worse again, whilst still on the meds. Tbh most people are so amazed at what a difference being dairy free makes that they skip this step!!

WMDO, I meant paying for formula, not paying for a paed.
(Anyway, you can ask your chemist to order it for you and just explain to them that you haven't got a prescription, you will pay. Nutramigen is - I think- about £7, Neocate is much more expensive, between £20-£30, can't remember exactly)

cantsleep I stopped the formula a week ago! I just meant I need to get a dairy free one for that feed.
I will try the cows milk on her lips/skin.

Can't believe it's in ham too!

duende ha, I thought I could buy a paed - so disappointed!

Will go to chemist today.

I bought a paed! Asked my GP for a referral to the nearest one in our private hosp. GP wasn't allowed to tell us who to go to so I did a bit of research and basically went to GP and said 'I need a referral to Dr B', job done, £60 to private hosp, and appointment within a week.

He was my favourite man on the planet for quite a while. They tested DS2 for lukaemia (so glad I don't know how to spell that one), cystic fibrosis and a lot of other scary sounding problems due to his failure to thrive and he phoned me at MIL's house on christmas eve to tell me they were all clear.

My 2nd and 3rd dc had reflux and were/are dairy intolerant. I suspect that my 1st did, too, but more mildly and that he outgrew it much earlier than the other two. I wonder also whether the fact that he had goatsmilk formula, rather than conventional cowsmilk, had any influence.

It's difficult to test for intolerances. The rash on the lips shows allergy, I think. Intolerances tend to be demonstrated, rather than tested for. If you can show a change when the trigger is excluded, and a recurrence of probelms when exposed to that trigger again, then you demonstrate intolerance.

You would need to cut out formula entirely, in order for your elimination diet to have any effect. If she is comfort sucking (which is entirley probable with reflux) would you try giving her a dummy some of the time? Don't assume that she doesn't like it if she spits it out - the way a baby pushes her tongue out to milk the breast may also push the dummy out. You might have to try several different types, or hold it in for her at first.

As for the medication: because it is not completely suppressing her symptons, going strictly dairy-free should still show a difference if dairy intolerance is the problem. The packaging or the patient info leaflet should tell you whether there is any dairy product in it.

Nairn oatcakes are dairy free (not the cheese ones obviously!), as are Bourbon Cream biscuits. Theree are loads of dairy-free snacks available, but you do have to check each label, as one brand of, eg, digestives, may be df but another brand may not. Convenience foods are tricker, you may need to do more home cooking, but you can still find plenty. Swedish Glace make absoluely stunning df 'icecream', and Alpro make yummy custards and 'yogurts'.

our son was in hospital after being constiapted and throwing up everything he ate/drank, eventually a dr suggested we try soya milk-worked a treat-i have a friend who had the same problem with her daughter, worked for her too. but i dont know if ur little 1 can try this as may b 2 young