Unconvinced by Paediatrician's advice - BF and allergies

[ilovetosleep]

We saw an Paed today who specialises in allergies. We're not in UK and often get conflicting advice (but we can travel for 2nd opinion to London so will do that if consensus on here is to go for it)

DS is 24 weeks, EBF, and has had horrendous reflux, gradually worsening since he was 3 months. Have only had advice from GP until now, including gaviscon and ranitidine, but off my own back have gone dairy free (6 wks) and soya free (3 wks). I thought I noticed a difference at first but tbh he's worse than ever right now so I'm unconvinced. I've tried a few solids and he's just become very constipated and reflux seems worse.

Symptoms are: reflux (arching back etc), food refusal, terrible sleep, red anus, mucousy poo, irregular pattern of poos (from every day to every 10 days)

Paed is convinced he is intolerant to something in my breast milk. He basically said the only option is to go on Neocate and stop bfing. He said that sometimes despite going dairy free, baby is just intolerant to mums milk without ever finding out what it could be. He said we'd done the most important 6 months and that now was a good time to make the swap as he might not welcome a change in milk as an older baby and using it as a weaning milk in food would be a good way to make the change.

I desperately don't want to stop BF, despite the stress it is causing (he'll only really feed through the night, gets upset at the prospect of feeding in the day). Obviously I don't want to cause him any unnecessary pain o discomfort and I really want him to be a more settled baby. But surely I can try some more dietary adjustments before giving up?

Eventually he let us try omeprazole on a 2 week trial, and if that doesn't work then he's going to assume its an unidentified intolerance and prescribe neocate. He refused to prescribe domperidone.

He also said to carry on weaning very slowly but avoid dairy, wheat, egg and soya until a much later date, under the advice of a dietician who I'll see in a month or so.

What should I do? Should I try getting to an allergy clinic in London? Which would you recommend? How do I know that it really is an allergy without allergy testing? I'm feeling pretty out of my depth and don't feel confident arguing with him as he's the only specialist here to advise me on this. But I also know from mumsnet that plenty of mums carry on BFing. And I always thought that BF reduces allergies? I also thought that if reflux is the main symptom, won't it improve with time, sitting up etc?

Please I would love to hear some advice as I'm feeling pretty devastated at the thought of stopping BF.

It's sad that you've had that advice.

babies/children/people can be allergic to pretty much anything. I understand where your paediatrician is coming from - neocate is the easy option for him because he can prescribe it and know that your baby is getting just-about-adequate nutrition, and not being exposed to allergens in your breastmilk.

However, giving up breastmilk is a dreadfully difficult thing for lots of mothers and babies. neocate can't provide the closeness and comfort of breastfeeding, and also does not contain the antibodies, probiotics etc that cannot be replicated in formula.

Obviously you must work with the medical professionals. . But it is possible to keep on breastfeeding a multiply allergic child, if you are committed to doing this and prepared to make some serious personal sacrifices with your own diet (in the short term).

You could try keeping a very detailed food diary, along with any symptoms that you see. food allergens can be in your breastmilk within about two hours, and may take about 2-3 weeks to be out of your system (and a further 2-3 weeks to be out of your baby's system).

The trouble with this is that there are so many variables. Your baby's allergens could be one or more of the common ones (milk, eggs, soya, fish, wheat, nuts, peanuts, sesame etc) or something that seems completely random (my ds1 is allergic to bananas, peas, lentils and a few other things I wasn't expecting, as well as some of the obvious ones. he also used to react with eczema to traces of onions, plums, cherries and other unexpected stuff in my diet).

Sorry, hit post too soon. Am on very inconvenient phone while breastfeeding ds2 to sleep.

What I did was to pretty much eliminate everything at once. I lived on broccoli, meat and rice (low risk foods) for a few weeks until ds1's symptoms improved, then added other foods in one by one, keeping a careful record of what happened to his skin, breathing, nappies and general health.

Obviously, this is not for the fainthearted, and you can't do it for long because you will run short of essential nutrients. Your breastmilk will be still be nutritious (your body will rob itself to feed your baby) but you do have your own health to consider. many health professionals will recommend that you don't do this at all - neocate does provide basic (!) nutrition, and if they are not personally invested in feeding the baby breastmilk and/or don't know about all the other benefits of breastmilk, I can understand why they might think this exclusion diet is a crazy option.

Anyway, it worked for me, and I have been following the same restricted diet as ds1 for the last six years. He has only recently stopped breastfeeding completely, so has had many years of all the health benefits of breastmilk. When he was younger, and I worried dreadfully about not being able to balance his diet properly, it was a great comfort to me that breastmilk is a complete and balanced food, designed forhuman

damn phone!

... designed for human children until the age when they lose their "milk teeth".

Anyway, this has been a long post. I do feel for you, because I remember how hard it was when I was desperate to feed my little baby myself, and the doctors kept pushing neocate at me.

choosing neocate is a perfectly valid option, and please don't feel bad if you decide to do this.

Good luck whatever happens.

We couldn't get DS symptom free whilst bf, i felt awful when we made the switch to neocate. Within a week he was a different baby, no reflux, vomiting, diarrhoea, rashes, eczema or nights spent screaming. I then i felt so bad for having insisted on bf him for so long.
I hate formula companies and i am a huge advocate of bf. I bf my daughter until she self weaned but for my son breast was not best. It turned out he has FPIES (see my post on the group for info) and was allergic to over 20 foods. No way i would have figured that out bf. We were lucky that he took the neocate well at 10 months, i know many others struggle.

It really is your decision to make and don't feel pressured by anyone, but do think with your head as well as your heart.

Hope you can figure it all out soon so you can both start enjoying his babyhood more xx

You could always try your baby on neocate for a couple of weeks and see if it is the hoped-for miracle cure, while expressing your milk to keep your supply up (and maybe freezing it) in case your son's issues are not related to your diet? My daughter is on neocate and it suits her very well. I also totally empathise about not wanting to stop bfing tho my experience was that the regret passed pretty quickly once I had stopped.
We have always been told that skin prick allergy tests aren't really suitable for food allergies or intolerances and that elimination diets are the way to go. All the best!

You could go extreme and do a allergy diet whereby you only have rice, turkey, and some basic vegetables then gradually introduce foods to see what happens. A bit hardcore though.

I know a poster on here (sleepywombat I think) who had similar issues and they couldn't work out her baby's allergies. Worth a search.

What solids are you giving? My two reflux babies reacted terribly to foods like tomatoes, onions, anything spicy, green veg, dairy, soya.... Citrus like oranges, pineapple was a no.... So I would feed meat and two veg type meals (eg chicken and potatoes). So be careful about solids.

Thanks for all the replies, sorry I haven't been back all day but DS2 has been crying all day and it's been a bit of a shit day. We stopped the ranitidine abruptly after the appointment yesterday and gave him his first dose of omeprazole, most of which he vomited up, so he's been medication free from 24 hours and he's been beside himself with discomfort, the worst he's ever been I think.

I'm really not sure I can handle a total elimination diet as I'm finding it hard enough to eat as it is. I've lost loads of weight. But I know that if I don't try it I'll always feel like I could have done more and I'll never get over it. BF is so important to me.

greenbananas I'm trying a food diary but I don't see how it can be that helpful if it takes so long for the allergens to leave the system - how do you know whether it is a reaction to something new or residual pain/damage from something he ate a week ago? I don't know if I'm right here, but I am leaning towards thinking mild intolerance rather than full on serious allergy, mainly beause his symptoms are 'only' (!) reflux and bowel related. He doesn't have any skin issues or breathing problems. Am I being naive? I do feel like they are pushing neocate at me without really giving anything else a chance.

piggyboo I have moments when I am sooo tempted to take the neocate, and I'm dreading a day when I do and everything improves. I'm glad it worked for you and I can't help feeling that i the same would happen for us, and I feel so bad that I can't fix it myself. Never heard of FPIES but just googled and I was surprised to see sweet potato listed as a (less common) problem food. I thought it would be as safe as you can get, DS has had it twice now and has been utterly miserable all day afterwards. What were your DC's symptoms while you were breastfeeding? What I read did say it was v rare in EBF babies?

AuntieRosemary I have considered this option but think the change to bottles and formula will be such an upheaval and I worry that he won't take the breast after 2 weeks...

Iggly So far he has had some baby rice (I swore I'd never buy the stuff and BLW DS1 but I felt in this case it was a safe option), banana, sweet potato, rice cake, broccoli and cucumber (not a lot went down!)

Banana can be hard to digest. Cucumber can cause wind (it gives me tummy ache if I eat too much).

Perhaps try a simpler diet with your ds e.g. small amounts of rice (too much causes constipation), pureed pears are great, chicken, potatoes, lamb, root veg. Introduce one new

Introduce a food every three days and watch for reactions.

Also given he "only" has wind and reflux, have you ruled out tongue tie? Because this can produce the same sorts of symptoms as reflux. It is where they take down too much air and the excess air causes them discomfort. Lift up his top lip - is there a flap attaching to his gum? Did it hurt in the early days of BFing? Did he click and gulp when feeding?

Thanks for your reply iggly.

Yes he has has tongue tie, it has re grown and he has had 3 snips now. After the last snip he fed well for 7 days before reverting to being miserable, so yes I do think there is something in that, although i also think maybe he fed so much as he knew he needed to to heal the wound iyswim? I'm in a place where TT is not recognised and I had to travel to UK to get the procedure done. I can't go though that again, and anyway the consultant I saw advised against any further intervention as it clearly will keep growing back. But it does make me doubt the whole allergy thing. Tbh, this has been going on for so long with no real diagnosis/successful treatment, I have been to and for with so many theories and its got to a point where I don't trust my instincts and I realt have no idea what it is that's causing so much distress. He certainly hast taken to solids in the same voracious way his big brother did, who had a successful Tt snip as bf for 2 years. DS2 seems to struggle even with purée whereas Ds1 wolfed everything down from the word go. Do you think Tt could cause reflux and that level of upset problems with solids? He cried for about 2 hours after lunch today :(

Sorry terrible typos am on my phone and doing first of night feeds! Also, can anyone explain why he feeds well at night and yet won't entertain the idea during the day, apart from while sleepy around nap times? He does show squirmy signs of reflux at night too but nothing like during the day. But he does wake every 2 hrs all night long...

My daughter was the same. She wouldn't feed from me during the day at all after the age of about two months, but would feed loads during the night. I ended up expressing and bottle feeding her my milk until she was six months (which I wouldn't recommend for obvious reasons!). I don't know if it is the same as for your son, but she was just a bit of a night hawk and was far too curious and sociable to breastfeed for more than a few seconds during the day - whereas with a bottle she could turn her head and watch people more easily. She did have some allergies but I had cut everything out of my diet so I don't think it was anything to do with my milk, just her feeding preferences! Maybe your son is the same?

Ps I met a woman yesterday who said her daughter was ill for the first year of her life - reflux, vomiting, diarrhoea, poor weight gain etc - and had turned out to be allergic to her breast milk - not because of dairy or soya or other allergens coming from the mother's diet, but because of the protein and lactose in the breast milk itself. Don't know how scientifically viable this is but maybe something worth researching?

I'm surprised he didn't suggest skin prick testing. Both my DC had skin prock tests at 6 months old.

With regards to FPIES, acute vomiting to bile is rare in bf babies but other symptoms are not. my son was ebf and was miserable, never slept, spit up huge amounts all the time. For other bf FPIES babies symptoms of mucus or blood in nappies are common (fortunately not for us.) If you go to fpiesuk.org and go to living with fpies, then our stories my son's story is on there. His name is Joseph.

We had a similar experience to you - my daughter was extremely unhappy and difficult to bf due to reflux issues. She is two now and very allergic to dairy, eggs and some nuts. My advice would be to push very hard for a referral to an allergy clinic - most hospitals have them. GPs and even paediatricians have limited knowledge about this but a specialist will be more supportive of your wish to continue to bf. I personally cut all of the top allergens out of my diet and then slowly worked them back in. Dairy and egg clearly made a difference so i avoided them but didnt completely eliminate. We had a skin prick test around 8 months which confirmed my suspicions. They can also do blood tests which are more comprehensive and accurate. My daughter sees a allergy specialist every 6 months for follow up testing We continued to BF until she was 15 months so it can be done, but you shouldn't feel like you are hurting your baby if you decide to stop or supplement. Your GP is giving you the fastest and easiest solution and there is nothing wrong with considering it - giving neocate or nutramigen could help and might be a lot less stressful for you - its no easy thing to modify your diet so much or to watch bub suffer. We supplemented with nutramigen from the time my daughter was 1 year to 2 years because she was at nursery and she did really well on it but I still bf her am and pm. I am pregnant with a second and would probably move to it sooner if we have the same issues, though still try to bf part time as is so special. Good luck.

I realise I'm a bit late in the day to answer this but....

I was in a similar position. My DS had persistent ezcema that was infected and would not heal, vomited throughout the day, was refluxy and barely slept. He has multiple allergies (15 at current count). Allergy paediatrician strong advice was to move on to Neocate.

I am really pro BF, and went through hell with my 2 DC to BFF them. I was extremity reluctant. (At thi point I was on an extremity limited diet as I had cut everything out, as a result I was under 8st at 7 months after having a baby when I had been shy of 9st previous to pregnancy). But I decided to have some faith in the Dr. I am so glad I did. Yes I felt bad about not BF but he improved significantly in a very short time.

It is your choice and no one else's business. But I just wanted to give my experience.

I get quiet upset reading people being negative about Neocate. And suggesting that going from BF to Neocate suggests that you are not dedicated enough or willing to make a sacrifice.

Sorry that was terribly written, no sleep and red wine to blame!

I know what you mean change ;) and i completely agree, there is no way i could have figured out my sons triggers to eliminate them, i mean really i would never have thought to eliminate chicken or oats. Neocate is a medicine, not a lifestyle choice, you can't view it in the same way as the usual formula vs bf debate.

Thanks piggy

I need to get over it!

OP I have recommended dr's/dietitian on your other thread. Just wanted to echo what the others have said re Neocate, it's not the usual BF vs formula debate. And an elimination diet is really really tough - I only cut out gluten, dairy & soya but lost 8kg in a few months (not in a good way), & was constantly hungry & grumpy. DD was 15mo when we started so already well established on solids. You might find that supplementing BF with Neocate Spoon ( mixed with pureed fruit etc) is a possibility, it's the only way I can get Neocate into DD. She has been a totally different person since starting it.

I agree with you all, it's not the usual bf v formula thing at all. I am in denial I'm sure but I can't Stop thinking he might have no allergies at all and I'd feel awful stopping bf then to find out it was simply infant reflux all along with no allergy link. I have no allergies and neither does ds1, I keep conveniently forgetting that dh's family is full of intolerances.

I'm interested in what you're saying about neocate spoon zam. I don't mind the idea of supplementing bm with something as eventually I might have to get him on other milk and if neocate is as vile as people say it might be worth trying sooner rather than later. But, surely if there is allergens coming through my milk I need to stop bf completely? Is simply cutting down enough? Is that what you did?

I am now dairy, soy, egg and gluten free. I don't believe he's allergic to any of the foods he's eaten so far (mainly fruit, veg, rice, buckwheat and chicken) as he hasn't got any worse since eating them (just stayed as grumpy as before) so if there is an allergy it's to something my milk.

Thanks for al the replies, sorry to have multiple threads going but i figured they were all asking different questions... Sorry that's probably really bad form.

Thanks again

Unfortunately allergy testing may well not give you any more answers if your DS symptoms are only gastro-related All tests on DD have been negative. You may well need to see Neil Shah as well. We kept her & me totally dairy & gluten free for 4 months. Then I gradually reintroduced gluten & limited dairy (my life has improved no end!) & now DD eats 1 piece of toast each day. It is slow & largely guesswork, but for us relatively easy as main (only?) trigger for DD seems to be dairy so once we cut that out & gave her gut a few months to heal (endoscopy showed damage, but not coeliac type) all was well, so I was able to continue BF 4 times a day as well as the Neocate Spoon & all her other foods. If her triggers had been something else/more I couldn't have done it.
Definitely see a dietitian as well. It's so difficult if not impossible to do this by yourself. Rosan Meyer is utterly brilliant & works closely with Neil Shah. I can also recommend Jackie Falconer.
Where do you live? I have also done all this from overseas (Botswana). Btw Neocate (of any type, inc Spoon) is not covered by our insurance (from the USA) & is v expensive. Neither are dietitians but you can get around that. Good luck with it all - feel free to PM me if you would prefer x

I'm not so sure that any gluten you eat will end up in your breast milk.

not quite the same thing but I am severly intollerant to gluten, the smallest amount will affect me, however, i can drink gallons of milk and cows eat gluten all day long. So I would imagine the cereal protein goes in and dairy comes out.

Gluten proteins have been shown to pass through breastmilk.

Well I just googled gluten in breast milk and the studies show that gliadin is passed into breast milk and not gluten. Gliadin is found in oats which some coeliacs can tolerate, so i stand corrected as i am amazed that gliadin gets through.
There doesnt seem to any real research however on what allergens are passed through in breast milk, and maybe there should be to help people who are desperate like the OP and other pp.