Advised to stop BF but very sad - what would you do?

[Grayfig]

Hello all. We’ve been advised by our paed to consider stopping BF my wee 18 week old girl due to possible protein intolerance. Eliminating dairy and soy hasn’t really helped. She has mucousy stools with occasional blood and is quite often unsettled at night with poor day sleeps. He is not keen on elimination diets and suggested amino acid formula.

We worked very hard to establish EBF after topping up with formula from 2-11 weeks when she was slow to regain birth weight. It has been a tough time but now BF is finally easy and enjoyable for us both.

On the one hand, I obviously don’t want to harm her and know we both need more sleep. On the other, she is putting on 150g/week, happy in the daytime and developing well, loves BF and it’s the only way to reliably settle her. Also - she may still sleep poorly on formula anyway. I really feel so sad thinking about her searching for the boob and having to refuse her, and don’t want to forgo the other benefits of BF for her.

What would you do in this situation?

I would get a second opinion

Same, a second opinion is a good idea.

And maybe see about getting her tested for coeliac, musousy bloody stools and unsettledness can be linked, babies under one are being diagnosed this early,

Or any chance she has a tongue tie? If she's not coordinating her sucking and swallowing and getting lots of milk quickly that can be linked to your symptoms

You could always try an elimation diet and see what she is like with the person who gives you your second opinion too

OP, you could be describing my youngest grandchild who's now almost one and to be honest I don't know how my wonderful daughter in law has managed to keep breast feeding till now. It really has been a superhuman effort but she knew it was what she had to do so she kept on at it even though we did initially get special formula sent to us from various parts of the world to see if we could try to find one that the wee one would take - it all tastes bloody horrible.

There were times I wanted to cry for my daughter in law even though id been a breast feeder myself, it was just so hard to see her exhausted and constantly with the baby on the breast. But almost a year in the wee one is looking wonderful and is a happy baby, she still has the odd bit of a problem but she is great even on a bit of a restricted diet. And my daughter in law? Well, she's looking and feeling great as well apart from the normal tiredness all young mums feel when they have children to look after. I was out with her the other day and I sat there thinking you really are quite something

Did the pead suggest what would be a suitable alternative?

Jump, its the amino acids formula the OP mentioned. Its bloody horrible stuff and we couldn't get it where we live so we had it sent to us from various places so we could try the wee one on different brands. It was all horrible and I really do believe she would have just not taken a bottle rather than drink the stuff.

no way would I give up breastfeeding if you are both enjoying it.

Could you give one bottle of the neocate per day?it doesn't have to be all or nothing when the cause is still unknown.

I would get a second opinion too!

Oh yes sorry I missed it on my first read.

If baby has suspected cows milk protein allergy you can eliminate cows milk protein from your diet. It is a standard way of treating it, why is your paeds "not keen" on this treatment?

In fact I would be continuing breastfeeding to give your baby the best chance of avoiding future allergies. Formula fed babies are more likely to suffer allergies.

You will find lots of info online. I believe initially you trial a 4 week exclusion diet. If baby's symptoms improve you then reintroduce cows milk to your diet temporarily to see whether symptoms return and confirm the diagnosis.

How much you need to avoid cow's milk depends on your baby. A friend did a strict elimination diet for a month, but after that experimented and found her baby could tolerate her eating butter for example. Another friend found her baby needed her to fully exclude cows milk, which she has been happily doing for years (as she breastfeeds him as a toddler).

If you follow the elimination diet long term you should ask about dietary supplementation of calcium.

In your shoes I would speak to a paed who is supportive of breastfeeding.

Imagine if you stopped breastfeeding, spent a month trying to give neocate (which tastes terrible), then the Paed concludes it wasn't cmpi. All because he "isn't keen" on elimination diets....

Try the Kelly Mom website for breastfeeding info, have a look for a CMPA breastfeeding group on Facebook for some support from other mums.

There wouldn't be any benefit from adding neocate whilst mum was still eating dairy *3lucky" it is a case of avoiding exposure to cows milk protein

If baby has suspected cows milk protein allergy you can eliminate cows milk protein from your diet. It is a standard way of treating it, why is your paeds "not keen" on this treatment

The Op has done that and it hasn't helped.

Oh I'm sorry I was just trying to help, I thought the mother had eliminated dairy and soy already and just wanted to help with weight gain and get some sleep! I just don't think giving up the breastfeeding would be a good idea at all when they are both enjoying it so much.

Honestly I am shocked at some of the responses on here. If breastfeeding or any other factor in my control was causing my child to bleed into his faeces or otherwise causing him harm, then I would certainly take the advice of the medical professional who has treated that child and stop breastfeeding. "Breast is best" may be true when all other things are equal but in this case, clearly all other things are not equal. The OP has said she has already eliminated dairy and soy so advice to eliminate these now doesn't make sense. If you really want to keep BF on the table, then one option would be to start the amino acid formula while pumping to maintain milk supply and see if symptoms improve.

OP your post implies your child didn't regain birth weight until 11 weeks - am I reading that correctly?

Sycamore I can see your point but sometime formula feeding is just not possible.

Oh and just to make clear - I'm not a believer in breast is always best

Thanks very much all. Some clarifications: she was slow to regain her BW but regained it around 3 weeks, we only continued on formula as gain was still slow thereafter for a while. She had a tongue tie that was snipped at 3 days old and is apparently fixed.

The thinking is that it's an intolerance to a protein other than dairy/soy (CMPI), but it's impossible to test for exact cause. I have looked on Kellymom etc but agree with the paed that eliminating also eggs, wheat etc results in very limited diet.

The paed is supportive of BF - to a point. He's said we can push on "for a few weeks" as she is gaining weight but thinks long-term we likely need to stop. He thinks total elimination diets are unhealthy for both myself and bub. He's suggested a gastro we could see but doesn't know what they would add and we are fairly confident in his opinion in general - he's known as a doc who is both a great communicator and clinician (myself and my hubby are both medical but not paeds). The paeds (gastro specialists, he is a neonatologist) who we'd prefer to see as a second opinion have a 6+ week wait privately.

I can't pump sadly - when I'm alone on weekdays bub won't be put down for long enough to do all the faffing required!

If you want to carry on breast feeding then I think that in your position I would probably try a complete elimination diet myself for a short period of time, starting today, and see what happened before stopping bf.
I would probably literally change to eating just veggies and fruit (and no common allergens like celary, nuts etc) for a week or two and see if they baby's symptoms improve. And if they do then faff around trying to work out the cause by slowly reintroducing wheat, eggs etc one at a time.
Once you know the cause you can make an informed decision if they diet is too restrictive for you to sustain long-term; or whether you would prefer to do that than stop breast feeding.
At the moment you don't really know what the options are, until you work out what is causing the symptoms. And assuming it is caused by allergy, you'll need to work out the cause of the allergy at some point anyway - either now or when you begin weaning - as baby is likely to react to it as a food too.

MrsP - yes, she may not take the formula but is pretty good with bitter meds like Zantac, so likely would be OK. We know she takes a bottle well from previous formula.

Sycamore - there are also health downsides to formula compared to BF, such as increased allergies in the future and missing out on the benefits of BF such as reduced obesity risk and effects on cognition and emotional development (although I agree these are less tangible than blood in stools etc). If the paed had said to stop right now, no further discussion, it would be more clear cut.

At the moment my strategy is to try also to avoid wheat, and am thinking about a food ordering service where they cook you healthy special meals - as I'm struggling to eat properly. I'm still undecided on the second opinion, partly because the person the paed recommended is apparently not the best communicator and a bit abrupt, according to our GP.

I did this OP, for 34 months. Very restricted diet for a vv prem baby who was neutropenic and needed heart surgery.

Eggs, wheat, dairy, some vegetables. www.amazon.co.uk/Whole-Foods-Allergy-Cookbook-Homestyle/dp/1890612456/ref=sr_1_12?ie=UTF8&qid=1494218670&sr=8-12&keywords=Allergy+cookbook&tag=mumsnetforum-21 used this cookbook and survived it.

I bought this when it came out and still use it because the food is lovely even though DD (11) can now eat everything.

She had an epipen for many years.

I had this problem as a baby, apparently. I was given some kind of soya protein formula and developed an allergy to that as well. I'm now extremely allergic to peanuts, peas and other legumes, as well as all soya products.

Oh sorry misread your post (half asleep!), I thought you were talking about cmpi.

I think in your shoes I would find out how long you would need to trial the eliminated diet for to see if your baby improves, and then I'd trial it. If baby improved you could reintroduce allergens and see what you are looking at for your diet going forward.

If you decide that such a restrictive diet isn't feasible for you then stop, you need energy yourself. But I'd want to actually find out if that is the problem first, and what the diet entailed.

I know a mum who excluded dairy, soy, several nuts, fish, egg and sesame - eek - she did say once she got over the initial "shit what do I eat" and into new recipes she found it do-able. She also said that when he started solids it was tricky to persuade him to eat enough healthy food so she found being able to breastfeed helpful to provide nutrients. So that was a benefit.

Greyfig Do you have an IBCLC local who you could see or see if she can recommend a paed who is open to working around breastfeeding?

She could check the completeness of that frenotomy too.

And if your looking for meal ideas maybe join a local fb group about gluten free eating, you'll be surprised that once you learn what it's in it's not actually that hard

No tt would cause blood in stools though elimination diets whilst a pain for you will not impact on your milk at all. If baby is growing and well then there is a good argument that your bm with its antibodies is better for your baby than the amino acid formulas which are pretty unpalatable and used as a last resort.

Newman, we previously saw an IBCLC who was wonderful and the thing is - she was actually recommended by the paed and they work together (e.g. they have written a book together). This gives me confidence that he is supportive of BF where possible. The paediatrician has checked the frenotomy and it's apparently OK.

Stig - as long as the diet stopped the blood then yes, the breast milk would likely be better for bub.