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Two week old DD in hospital

(37 Posts)
steben Wed 07-Nov-12 11:06:08

Hope this makes sense am in a bit of a state. DD has been admitted to hospital after we began noticing blood in her stools - apart from this she has been completely fine. Very placid and happy baby, wakes like clockwork every three hours for a feed and feeds well - has gained 8oz since birth. Hospital admitted her and were very concerned and ran lots of tests all which came back clear - they then decided that she had an allergy to cows milk protein and has been giving nutragigem (sp?)
The stuff smells awful and she is not taking to it well - I am expressing breast milk but only managing to get about 8oz a day which I am mixing in with it to make it more palatable. I know it would be a lot worse for her but I am really upset that the docs have just decided that this is what is wrong with her - no tests etc I am also very upset that I having to give her vile smelling and tasting formula and feel very guilty that I can't give her more breast milk and that I have no choices over what to feed her. I suppose I would like to hear from people who have been in this position and also is it possible to request a different formula - having done some research Aptamil peptil seems like it could be an option - anyone successfully requested to try a different formula? I just feel really emotional that I went into hospital with a happy settled baby and am being discharged with a hungry unhappy one TIA

MegMogAndOwl Wed 07-Nov-12 11:22:58

I'm not an expert, my dd wasn't diagnosed with cow milk protein allergy until much later at 6 months.

Do you want to carry on breastfeeding? There's no reason for you to stop although you'll probably need to avoid dairy in your own diet.

Have they given any indication how long she's likely to be in hospital for?

Sorry I've mostly asked questions instead of giving answers. Hopefully someone will come along soon with more advice.

steben Wed 07-Nov-12 11:45:47

Thanks for the reply - we have just been discharged. I am expressing breast milk - have tried and failed at breast feeding thanks to latch issues I have been unable to resolve.

OHforDUCKScake Wed 07-Nov-12 14:15:04

Hi OP have you tried nipple sheilds? Its like putting a bottle teat over your nipple it helps the baby latch if they have nipple confusion.

I guess if the blood stops, they are right. And if not....

You'll know pretty soon.

Theres the option of Wysoy which is nicer but often those allergic to CMP are also allergic to soya.

It is possible to be allergic and/or intolerant and both affect the gut. Although its often with pain, gas, unsettled baby.

freefrommum Wed 07-Nov-12 14:19:29

You could ask for an alternative formula but to be honest it is not going to be easy to get your baby to accept any formula as they all taste very different to breastmilk. Yes to us Nutramigen smells and tastes awful but the younger the baby, the easier it is to get them used to it. One of the best ways is to start mixing very small amounts with baby's usual milk (in your case, expressed breastmilk) and gradually increasing the quantity of formula until they are used to the taste. It will take time and you will need to be strong and patient but it is possible (I had to got through this process at least 4 times with my DS when the medical professionals kept changing their minds about which formula to give him). However, as Meg says, you should be able to continue to feed your baby expressed formula as long as you remove all dairy from your diet as the tiny amounts of protein that pass through into breastmilk can cause problems for some babies with CMP allergy (but not all). The exception to this is the very rare cases of babies who have a potentially life-threatening intolerance to lactose and can therefore not even tolerate breastmilk but I'm sure the hospital will have already ruled this out if they are saying that they think it's CMP allergy.

MrsSpencerReid Wed 07-Nov-12 14:20:57

I dot think soya formula is recommended in under 1y but I could be wrong, my DS is on aptimil pepti and it still has a strange taste but isn't that bad, I'd drink it!!! It wouldn't hurt to ask to swap I guess, I have also seen others on here suggest a tongue tie can cause probs with latch/intollerance, hope you get it sorted soon smile

MrsSpencerReid Wed 07-Nov-12 14:24:43

Also, my DS swapped quite happily from expressed milk to formula and back when I wasn't expressing enough for all feeds, so its isn't always so hard to swap, but I am beginning to think I was lucky there!

freefrommum Wed 07-Nov-12 14:30:57

Mrs is right, soya formula is not recommended in the UK for babies under 6 months (according to British Dietetics Association) and in fact others suggest not until 12 months due to the levels of phyto-oestrogens and the fact that many allergic to CMP are also allergic to soya. Much better to stick to a hypoallergenic formula like Nutramigen.

Pancakeflipper Wed 07-Nov-12 14:31:48

Neocate is another formula used for allergies. It's not nice stuff - we used the toddler sachet version but my son was nearly 2 when we realised he had a dairy intolerance.

There's 2 things in dairy we can be allergic or intolerant to - milk proteins or lactose. Or both ( like my son is).

And it's really horrible getting a diagnosis. And when you feel like you are not providing the best for your child its frustrating and sad . But if it is an allergy the best thing for them is to have what makes them feel well and helps them to thrive.
Is your baby more settled now or have things not improved? Has the Dr gone through the options with you? For future reference you can see a dietician as well which might be handy.
There's a lot of trial and errors with allergies/intolerances which is upsetting to go through. But it gets easier.

Iggly Wed 07-Nov-12 14:32:43

If your baby is allergic to cows milk then you need to stop eating it. Then no need forformula.

Also have you seen a BF counsellor? Any evidene of tongue tie? It's not too late to reestablish BF.

AlphaBeta82 Wed 07-Nov-12 14:33:33

Hi Steben
I struggled with feeding and gained a lot of support from a facebook page called analytical armadillo. they are also wonderful support for diet/ allergy advice etc.
So sorry you are going through this especially in what should be such a magical time for you. xx

Iggly Wed 07-Nov-12 14:38:54

I will add, BM is the best thing for a baby with allergies. It's incredibly incredibly rare for a baby to react to BM itself - it'll e proteins passing from mother to baby (such as cows milk) which will do that.

steben Wed 07-Nov-12 15:13:32

Thanks for replies everyone - from birth she was on aptamil 1 and expressed breast milk - no joy with latch despite getting help although not tried nipple shields. I will maybe give those a try - no evidence of tongue tie although this no been mentioned but have been told I have very flat nipples which could be part of the problem. We have an appt to see dietician at end of month and consultant next week. I might see if I can try her on a different prescription formula in the meantime - am currently making it up with expressed breast milk in it as well and she seems to be taking it better now we are home. This is part if what I don't I understand about her diagnosis - she has no other symptoms - had been perfectly settled no extended screaming/rashes etc... Things that I have read are common in babies with CMP intolerance.

steben Wed 07-Nov-12 15:32:40

Just to add as well no one has properly gone through anything with us and it is only now I am home and reading about the symptoms and alternative formulas etc that I am starting to understand. It is upsetting as have no exp or history of allergies in family and DD1 had no issues.

OHforDUCKScake Wed 07-Nov-12 16:11:46

Flat nipples, definitely try nipple sheilds.

Please stick with bf, it really is the best thing you can do for your baby especially if she has problems with her gut/allergies.

steben Wed 07-Nov-12 16:48:46

I am doing what I can with breast feeding but from exp with DD1 I think it will still be combination so would appreciate hearing people's experiences with the formula. She has bought up most if what I have managed to give her today including breast milk sad

Iggly Wed 07-Nov-12 17:14:51

It sounds like it could be a mild intolerance. An allergy would result in anaphylactic shock or hives etc etc. many of us have mild dairy intolerance without many symptoms beyond wind/bloating/dry skin.

Iggly Wed 07-Nov-12 17:15:54

What sort of volumes are you giving? It could be that she's having too much or is windy or the formula is making her sick.

DS went from Nutramigen to Neocate when he was an inpatient. They don't like prescribing it, but will if needed.

Pancakeflipper Wed 07-Nov-12 17:29:51

I think it's cos' Neocate costs a fortune ( which you get free on prescription).

steben Wed 07-Nov-12 17:40:12

Prior to this she was taking between 2-3 and a half once a feed. Am giving same amounts but she very windy and bringing what I do manage to get her to take back up.

Iggly Wed 07-Nov-12 21:34:30

Can you go back to how you were feeding and demand that they test her properly?

Maz007 Thu 08-Nov-12 03:05:38

I'm afraid I don't agree with iggly Serious allergies do not necessarily lead to anaphylaxis. Do push for more testing but follow medical advice until you are reassured that she's not allergic. She could have a more serious reaction in future if she is allergic.

As for breast-feeding, I agree that there are many benefits to breastfeeding but you shouldn't feel pressurised to carry on if you don't feel it's right for you. If you want to persevere, absolutely do - there is lots of help available and I am sure a really good breastfeeding consultant would have lots to say. BUT if you decide not to push on after a certain point you shouldn't be made to feel guilty. Breastmilk is good, but not as good as a mummy who is happy and feeds whatever milk without it being caught up with guilt etc...

Like others have said, such early days with your little one - hope you can really enjoy her despite what must have been a very scary time. If it is an allergy, you are not alone - lots of us on here who have travelled down that road and it's not the end of the world, however tough at times.

Take really good care thanks]

Iggly Thu 08-Nov-12 07:02:04

Point taken maz007.

Disagree about BF though especially if the allergy is cows milk.

freefrommum Thu 08-Nov-12 10:40:42

Nicely put Maz007

greenbananas Thu 08-Nov-12 11:04:12

Yes, Maz - well said.

I'm a trained breastfeeding supporter, and very pro-breastfeeding for all sorts of reasons, but I would be the first to say that not being able to breastfeed is not the absolute end of the world. Problems with latch can usually be fixed, and flat nipples are not usually a major problem, so it sounds like you have not had the best breastfeeding support - this is not your fault and you should not be feeling guilty in any way at all.

Some mums do find nipple shields helpful in the very short term, but we don't generally recommend them as they are not really a long-term solution. If you do want to continue with breastfeeding (and of course this is totally up to you!), then it's still not too late, particularly as you have been expressing to keep up your supply, but you will need to get better support, and re-establishing breastfeeding won't be totally easy at this stage. The National Breastfeeding Helpline is 0300 100 0212, and they are very helpful, but it would be even better to see a properly trained real-life breastfeeding supporter if you can (are there any local groups near you?)

However, the most important thing is that your baby continues to get better, and that you choose what is right for you and your baby. I am wishing you all the best.

Afsana1 Thu 08-Nov-12 23:11:36

Hi I understand why you are so stressed. My dd who is 7months is on nutramigen aa. I remember the first time I opened the lid omg it stunk! It was like the gutter! But you have to remember this is the best thing for her my dd had a lot of symptoms and the milk really helps. I mixed the feeds so if she had 5oz used 4 scoops of normal formula and 1 of nutramigen and then slowly decreased the formula and increased the nutramigen until it was all nutramigen. I think this is the best way for them to get used to it. Nutramigen 1 has some cows protein in it but it is broken down a lot compared to normal formula however nutramigen aa is made from scratch and has no cows protein in it. I would see how she gets on with this and if she is not better ask for the aa.
I'm sorry that I have gone on smile
It will get easier you just get used to the smell.

steben Fri 09-Nov-12 10:21:54

Thanks for messages everyone - quick update I managed to get the doctor to prescribe aptamil pepti which she seems to find less offensive although still not taking the amounts she was before. I am going to see how she gets on with that - and I didn't realise you could mix the formula until they get used to it - she takes my expressed milk well so I do think the taste is affecting her. Feeling slightly better about situation but would like her to go back to taking original amounts and will also feel better when she gets weighed next week and hopefully she is gaining weight.

greenbananas Fri 09-Nov-12 10:53:21

Glad things are improving smile

freefrommum Fri 09-Nov-12 12:19:57

Good to hear. Hope things continue to improve.

Maz007 Fri 09-Nov-12 14:26:36

Sounds good! My DD's consultant joked that Nutramigen could be used to market swamp water by making people taste Nutramigen first :-) Your LO obviously has good taste buds already!

steben Fri 09-Nov-12 17:32:02

Thanks Maz007 - DH is worried that the consultant/dietician might tell us off for changing the formula but since she wasn't taking to the other one and this one seems better surely not? Will have to wait and see I guess!

Maz007 Fri 09-Nov-12 19:14:12

Both types are safe for babies with cows milk protein allergy - I'm sure the dietician / consultant won't mind in the slightest. I have a feeling they start with nutramigen because it's cheaper as they do less jiggery-pokery to the milk protein :-)

steben Fri 09-Nov-12 20:00:32

Well that's what my research told me - they prescribe that because it is the cheapest. The aptamil one seems a good middle road as it is more expensive but cheaper than the most expensive option Neocote. Def smells 100 times better! grin

CouthyMowEatingBraiiiiinz Mon 19-Nov-12 20:37:11

If you want to carry on bf, it is probably far nicer than Nutramigen. All you need to do is follow a CMP free diet yourself. 2mo was when my DS3's CMP allergy was picked up, and I successfully bf until he was 12 months old.

If you want some tips, feel free to PM me.

AnaphylaxisCampaign Tue 20-Nov-12 10:44:40

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

MayfairMummy Tue 20-Nov-12 11:56:00

'which' formula you can use depends on how sensitive your little one is to CMP. If you completely cut out all dairy from your diet (watch out for the whey in sooo many things), you can continue to use b/milk. Look out for other possible allergens, though - soy and egg are common in those with CMP allergy.

As for the formula, my DS2 can't use anything except Neocate - the most expensive one - because of his strong allergy. It's not anaphylactic type reaction, though. You need to find out what works for your little one (sadly, here, my experience has been that private sector is hugely better than NHS on breadth/depth of testing, etc). Good luck.

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