Multiple allergies and breastfeeding - how long to carry on?

[MayfairMummy]

DS2 (8 months) was diagnosed with CMP several months ago by the paediatric gastroenterologist. By that stage, I'd already figured it out, and had almost completely cut out dairy from my diet (occasional butter on bought sarnies, etc). He said that the best thing to do was to b/f for at least 1 year (preferably 2) as it increased the chance that DS2 would grow out of his allergies.

Yesterday we saw the allergy specialist, where DS2 tested instant positive to CMP, eggs, nuts. Specialist also said to avoid soy until we're certain (could be delayed reaction). Allergy specialist said give up breastfeeding immediately and just use Neocate. Also suggested to avoid legumes until all symptoms have gone and i can do a food challenge

So my question is, do I keep breastfeeding (and not eat any soy/CMP/eggs/nuts/legumes myself - made more difficult because we're a pescatarian household (vegetarian plus fish) - or do I just call it quits and move on to neonate? And does that answer change if I'm pregnant?
TIA.

Can you ask to be referred to a dietitian? They might be more helpful, and be able to give you more balanced advice.

I had the same thing as you with DS1. He had horrendous eczema, and when he was 5 months old I was told to basically give up cows' milk and soy (hadn't found out about the egg and nut allergies at that point) by a brusque paediatician. I was as DH is a vegetarian and I was wondering just what the hell I would be able to eat. The receptionist saw my distress and bewilderment and called the dietitian on the off-chance that she had some time to see me then and there. (Bless her! I had forgotten that till now! What a nice thing to do) The dietitian was a lot more practical and also reassuring. She said that you can't avoid soya as it is in just about everything and just to do my best with the cows' milk. She said that sometimes the allergy can be easier to manage than the diet!

She did not recommend the substitute (I think the only one available was called Nutramigen at the time) as she said it tasted awful and babies would only accept it if they were put on it straight from birth and had never tasted anything nice different. That was 12 years ago - hopefully Neocate tastes a bit better though.

I cut down on milk but did not cut it out. Similarly with soya. DS1's eczema improved 1000-fold, mainly I think due to cutting soya out of his diet - I had already cut out cows' milk as a precaution.

However - the dietitian suggested I try DS1 with cows' milk at the age of 1 to see if he had grown out of his allergy. I doubted this would be the case but did as I was told, and ended up having to call an ambulance. His milk allergy had got worse in that 6 months and we ended up having to have epipens. I carried on breastfeeding him and eating the same diet and he never had a bad reaction to my milk - although something with the smalllest milk trace in it would give him spots round the mouth etc. I asked an allergy specialist about it on here once and he said that in some people the CMP doesn't pass through into the breastmilk, so I think that must be the case with me.

I was already pregnant with DD by the time DS1 had that bad reaction. I had to stop feeding him when she was born (he was 17.5 months); he was ready to stop anyway as I don't think he liked the taste of my "pregnant" milk. I had to keep DD away from eggs, milk and nuts until she was 1 year old and allergy tested and I had to exclusively breast feed her, which I did till she was over 2. I did the same later with DS2. Neither have any allergies at all.

Fast-forward 12 years - DS1 is a strapping lad, tall for his age and none the worse for his diet of Rice Dream. Still allergic to milk, egg and nuts but not to soya any more.

Sorry for long post and probably not very helpful but I wanted you to know what it was like further down the road.

Breast milk where you cut out all allergens and neocate are not like-for-like. Necoate is disliked by a lot of babies and it does not have any of the extra health benefits that breast milk contains - including, I believe, protection for the gut. I would say that allergen free breast milk is much better for your baby and the fact that she has multiple allergies makes it even more so because her diet will be restricted when she weans onto solids. It is also my understanding that most foods can be eaten by the mother during breastfeeding because they do not pass through into the milk. CMP is one of the exceptions to this as you know, though it sounds like you have been lucky.

Personally I would not accept breastfeeding advice from someone I was not sure understood this and was willing to work with me and it sounds like the allergy specialist falls into this category. S/he has probably had very little or no training on breast feeding. I would want to know that the specific allergens my child was sensitive to were passing through the breast milk and causing problems.

On the other hand, you are a person and entitled to eat a good diet yourself, and if you feel the risks outweigh the benefits, you have nothing to feel guilty about by stopping. Just be aware that many, many mothers have given up breast feeding on the advice of 'specialists' when there was actually no need. Is this an emergency or can you take some time to research and make your decision? It sounds like you have some time at least, either way.

La Leche League would be a good place to start for informed advice on this.

Dont stop bf!!!

What terrible, terrible advice!

Breastmilk is literally the best thing you can do for your allergic baby.

I have an 18 month old and was told similar by a GP (I have since heard that the top London allergy specialist that we are due to see confirms that bf is absolutely the best thing we can be doing) so extensively researched breastmilk in comparisson to Neocate. Its shocking, bm has far far more good things in it that Neocate cant come close to competing to.

Neocate tastes and smells horrific and wont protect him against bugs the at bm will. It will help all the things allergic babies are prone to, ear infections, eczema.

I dread to think how my son would be without it.

I too avoid all the food you do, and a few more.

If you are happy to continue bf, please do. Your son can get nothing better than that.

The NICE guidelines recommend that breastfeeding mums are given advice about exclusion diets, and not that they are told they must give up breastfeeding!

There is absolutely no need to give up breastfeeding unless you want to. Restricting your own diet can be hard, but if you are prepared to do it then it's entirely your choice. Neocate can be a lifesaver for mums who are unable to breastfeed, or who do not want to breastfeed, but it is not compulsory for you to move your baby on to Neocate if you do want to continue breastfeeding.

My DS does react to traces of his allergens in my breastmilk, although this is not the case for all children with allergies. I breastfed DS1 regularly until he was 3 years old, and have been avoiding CMP, eggs, nuts, seeds, beans, peas and lentils, onions (and a few other foods as well) since he was a few weeks old. I think it is harder for vegetarians, as the choices of protein are so much more limited, and I have started eating meat since DS1 was born. However, if you can get enough protein from fish then you don't necessarily have to start eating meat.

It's fine to breastfeed through pregnancy, even if your diet is limited - just so long as you are eating a healthy and balanced diet despite the restrictions. I breastfed throughout my recent pregnancy, and gave birth to a healthy DS2 just four days ago - I am still following the same restricted diet (although DS1 was not impressed when my milk turned to colostrum at about 30 weeks, and has pretty much given up breastfeeding since then).

I'm a bit shocked that your allergy specialist told you that you must give up breastfeeding. DS1's allergy specialist said exactly the opposite, and was really positive about the benefits of breastmilk - even though two ill-informed GPs and a hospital dietician had already told me that I must use Neocate instead.

You do whatever you feel is right for you and your family!

I agree with the other posters, I really don't think you should give up breastfeeding unless you really want to. I'm very surprised that a specialist would recommend this. However, I would recommend starting to introduce Neocate into your little one's diet as it is quite an unpleasant taste and the earlier you can get them used to it, the better. You will probably need to mix small amounts with some expressed breastmilk initially and then gradually increase the amount of Neocate versus breastmilk until he's used to it. This will make it easier in the long run for when you decide to stop breastfeeding. You could try using it to mix his breakfast, make custard or sneak it into other foods too just to get him used to the taste.

Freefromm why does a child ever have to be introduced to Neocate?
I certainly have no intention of introducing it, ever.

Im very surprised you said that.

why does a child ever have to be introduced to Neocate?

Well, they don't really. DS1 has reached the age of 4 without a drop of the stuff ever passing his lips. However, I was able to breastfeed him all that time, and breastfeeding that long is not for everyone. Some mums have to return to work, which can make breastfeeding a bit more difficult, and some mums simply cannot see themselves breastfeeding a toddler (although some do change their minds when the time comes and find themselves carrying on anyway).

There's another thread at the moment about what 'alternative milk' to give in cereals and other food when weaning. In that situation, Neocate is a better, more nutritious option than oat milk and Kara etc.

I have heard that Neocate tastes absolutely vile so, if the OP does intend to use it at any stage, then introducing a bit in food now and then is probably a very good idea. Like I said, we never used it, but it does have its place and can have benefits for some children in some situations.

greenbananas did I hear you say you'd had a new baby four days ago??!? Congratulations and blimey you're sounding coherent!!

I'm still breastfeeding my 14 month old DD for what it's worth... and she gets Oatly on her cereal because I lost the will to express every night a couple of months back. I try to make sure she gets extra protein and fat and iron etc in her diet but feel that with her two / three BM feeds she can't be missing out on too much.

Sorry, I don't have time to read all of this but would like to also say you don't have to give up breastfeeding if you don't want to.

My ds was diagnosed at 6 months - CMP/egg/Nut/Sesame (also soya for a while). I breastfed him until he was 2, he never had formula. I gave up all his allergens and found it invaluable practice for working out what he could eat in the future, it's very handy when they're weaning to be able to let them eat from your plate. It's also very good practice getting used to label reading and menu planning around allergies, all of which you'll have to start doing pretty soon.

Silver lining - lost loads of weight cutting out dairy

OP you've received lots of good advice here about not giving up breastfeeding if you don't want to (but equally not feeling you HAVE to go on indefinitely if it is making you miserable at any point).

OHforDUCKScake I agree with Greenbananas that Neocate is often useful at a later stage even if a baby is breastfed for a fairly long time. I breastfed until DS1 was 15 months old and then at 18 months we successfully introduced Neocate. He continued with that until he was 6 and only stopped because we changed country and it was no longer funded adequately, but the allergy specialist in France would have kept him on Neocate until the end of childhood, so I guess age 10-12. I suspect they stop earlier in the UK, but many mums do not want to be breastfeeding their children well into their childhood :)

OhforDucksSake I realise that some mums do carry on breastfeeding until their child is 4 and beyond but the simple fact is that the vast majority don't so at some point their child will need a suitable milk alternative and the later you introduce those alternatives the harder it is to get them to accept it. My DS stayed on Neocate until he turned 5 as it is so high in calcium and other nutrients and the dietician recommended it. I'm very pro-breastfeeding and would never suggest that a mum should give up unless she wants to but I'm also realistic and understand that most mums will decide to stop breastfeeding at some point. I see nothing wrong with breastfeeding AND giving Neocate, even if it's only on their breakfast. I assume that your child will not remain on breastmilk forever and will eventually need a suitable milk alternative so what's wrong with Neocate? It's far better than soya, oat, rice or coconut milk.

Wow... thanks for all the support, everyone! I should point out that the specialist didn't' actually say i HAD to give up b/fing; she said she had a few mothers who didn't take her recommendation.. but then went on to say things about them that generally suggested they were a bit bonkers (though i personally agreed with them). I think her theory is that by stopping, you can control the allergens much better, and she said that all the benefits were gained in the first 3 months of b/fing (let's see the reaction that one brings on here! (and no, i don't agree with that last bit either)). Perhaps it's all based on her experience of mothers who don't actually want to give up their normal diet..

Whilst I've gotten rid of most of DS2's symptoms, it would be great to get rid of them all - including the reflux that's causing him pain - but, selfishly, it would also be great to be able to eat a chocolate digestive - or even an oat cake biscuit (whimpers as her previously 'ok' ginger oatcakes are taken away because of soy lecithin) - when i'm at playgroup, or to buy a sandwich at boots when i'm in a hurry and need food. We have been recommended a dietician - I'll follow that up, and I've pulled out all the cookbooks to start perusing recipes that fit a household that's non meat/dairy/soy/nut/lentil/egg, with a diabetic and a terribly fussy 4 year old. At least I might lose some more of the baby fat!

Tried DS2 on neocate this morning just to see his reaction - pretty much the same as mine (i tried it; it DOES taste awful). I think I'll just continue the b/fing while i can, and spend a month or two to see how it goes before i give in. DP (who also wants me to give up b/fing so i can fall pregnant again immediately), can just live with it (i've hit that big multiple of 10 age where people start to worry). And as for the 'if i'm pregnant, does it change', well, i had nasty cramps last week that i can only guess were implantation cramping (AF is back, but irregular), but I've POAS'd each day since (no sense of patience - can you tell?) and still negative, so maybe it was just random cramping (???).

Balloonslayer... thanks; it's great to hear other people's stories..
Provincial ... specialist suggested that it's more than just the CMP that pass through the breastmilk (could be nuts I ate that caused DS1's recent facial swelling), but worth researching (MM makes note to see dr google - did see some LaLeche yesterday, but not as helpful as i was hoping)
DucksCake .. thanks; all advice gratefully received.
GreenBananas.. I bow down to you. You are a goddess (4 day old and giving clear, sane, concise advice? wow). (oh, and yes, i've started eating meat out of the house too - how few restaurants do a veg meal with no dairy!)
Freefrom... I think i'm with you. Variety of potential diet is always good - if something does go awry (i had huge problems b/fing DS1), I'd like to think that DS2 will at least take neocate in his porridge or similar. I'd rather use that than oatmilk while he's young. (and before you say it, everyone, I just don't make enough b/milk by expressing for it to be of any use - despite the hospital grade, double pump).
Bilbomum.. i think you've got the key here; it's the menu planning i need to get my head around (i've gotten lazy and tend to just decide on the day what we're having - usually based on what was left in the fridge).
Weta.. Interesting about age for neocate in france. wow. makes you think.

Thank you so much, all.. feeling much better about my approach today, after reading all this!

Good luck with whatever you decide to do *MayfairMummy. I certainly don't think it's selfish to want to be able to eat normally! Life with an allergic child (& a diabetic child in your case - double whammy!) is hard enough as it is without the added pressure of having to watch everything you eat for fear of making your baby ill. I have complete admiration for those who do continue to breastfeed on a strict diet but I equally see nothing wrong in choosing to switch to a hypoallergenic formula. Happy mum = happy kids.

Sadly, my diabetic 'child' is 43 ... but he's just as bad as the kids. 10 years ago, he'd make the occasional salad for us, but then he realised that I too knew how to make a salad, and he stopped that too :-/ When I stopped buying anything adult 'instant' (eg chips, biscuits, etc) as he complained that he only ate them because they were 'in the house' .. he started eating the toddler snacks instead :-)

there's a vegan website that you could try, as the soya thing is hard to eliminate.

non meat/dairy/soy/nut/lentil/egg - is that the whole list?

your OP didn't mention legumes, is that on your list of avoids, too?
so no beans, or pulses at all?
baby boys are supposed to avoid soya anyway.

but you're okay for wheats etc?

some ideas to start

this blog might help

protein foods so you can make a list of what you can have

Good luck OP.

Thanks to those who replied to my OP WRT my question of ever introducing Neocate.

Where is the cut off point though? At what point of stopping bf can a child so well without Neocate?

My baby is 18 months now, I intend to let himself wean whether its 2, 3 or 4 but if he naturally weans next week I would think with a varied diet he would do well. Although I would probably give him supplements for a year or so.

Im guessing then, that others dont agree and think a child if 2, 3 and even 4 should have Neocate if not on CM or BM?

*replied to my post, not OP.

nickelrocket ... thanks! i particularly like the blog. There was no specific "must" advice on legumes as a whole; t'was suggested i hold off until all symptoms had disappeared in DS2 and then reintroduce to see what happened. No comments at all re wheat.. i'm going to go with the idea that it's not an issue unless problems continue after the month.

OHforDUCKScake maybe you should have a chat with your child's dietician as they should be able to advise you on whether or not your little one would need Neocate (or similar) if and when he chooses to wean himself. Our dietician was clear that given DS's restricted diet and the amount of calcium kids need each day he should stay on 2 sachets of Neocate Active until the age of 5. He has only just switched to fortified unsweetened soya milk but the dietician has also prescribed Calcium Santoz syrup - I can't believe how much calcium they're supposed to have! I'm sure I never had anywhere near that much (have never really liked dairy products) so I'm probably going to suffer with brittle bones in a few years's time

OhforDucks - in response to your query I think if a child eats well then Neocate doesn't have to play a part. DS was fully breastfed and never had formula, I stopped feeding him at 2 when I ended up in hospital unexpectedly (DD 10 weeks prem but that's another story).

All done with the support of the consultant and dietician - no one ever suggested he needed more. His weight has always been monitored and he has a calcium supplement but apart from that nothing else.

He's always been bang on the 50th centile for height & weight so no issues there. I sometimes wonder if he would have been bigger without the allergies as his sister is only 3lb off his weight and is 2 years younger but I've learned over the last 6 years not to ponder over what might have beens!

Thanks for the replies. Very different!

He had his calcium tested recently which was great. He'll be needing annual blood tests so I think I might keep an eye on his calcium levels that way, giving them too much is as bad for them as not giving them enough.

So hard to know whats right!