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.

I havnt read through but I understand where you are coming from.

However for my child stopping breast feeding and going to neocate was a lifesaver literally, she was so malnourished due to being intolerant.

We had a new child within 12 hours of switching, it was amazing.

I'd suggest expressing and trying neocate for a week or two.

It may really be the answer you need! As difficult as it seems to stop.

What the pead means by gluten is wheat.

I would recommend you try neocate/nutramigen for two weeks. Express in the meanwhile and see how it goes.

I suspect that your LO probably has multiple allergies. You can't eliminate everything from your diet.

If you really really really want to continue breastfeeding and are prepared to do it until your LO is two, then you can go on a very simple diet. It is mentioned in prof granstoff's book 'the complete guide to food allergies and intolerances'. I would highly recommend the book - it is very comprehensive.

As your pead said, the book also mentions that there are some instances where a child is just allergic to breast milk. It does happen.

Gluten is wheat oats and rye.

Haven't cows got four stomachs for digesting and redigesting their food? (Or is that sheep?) I assume that may explain how gluten doesn't make it through to their milk while it does to humans'.

Good grief you are having a time of it, aren't you? I don't really have any useful advice but just wanted to say how much I sympathise. Ebf til 6 months was one of the hardest things I've ever done and I completely understand your guilt. However, even as a very enthusiastic bf-er, my advice would be to try the Neocate and express like crazy. So many people on here are saying it worked for them very quickly, so you may have an answer within a few days. If it works then slowly try introducing bf, maybe just morning and night, and make peace with the fact that you've done a brilliant job ebf-ing this far and are now doing what you have to do to keep your son healthy and happy, and yourself sane :)

You feel devastated, you haven't explored all drug or diet options so you still can. Little refluxers website is always worth a read for info about what worked for different babies.

Any protein can get into bm so it could be a few things, or like you say not even an allergy. Whether bf protects against allergy...pretty weak evidence but it does plenty of other stuff...

The TT is maybe worth revisiting. They don't regrow they scar, if this has happened repeatedly there can be greater not lesser problems. I would see a paed surgeon, in london I would see Mr Patel at Kings and prob go private as you are on the outer age limit of the NHS provision.

Gluten is in wheat, rye, and barley. Gliadin is in oats, it is similar to but not the same as gluten, which is why some coeliacs can eat oats and some can't.

Sorry to derail, but I think if you are talking about intolerance and allergies it helps to be absolutely clear on the definitions and names of things so that when you are talking to medical staff you are able to be precise. Which may help in pinpointing exactly where the problem lies.

Wow so many msgs to read through

We went to London this week and had skin prick tests with Dr Du toit.
They were all negative apart from a small reaction to egg, he said it wasn't a sever allergy but to avoid it, monitor it, and re test in 6 months or so.

I don't really know where I am with it all tbh. He has improved massively since we started omeprazole, and cut out wheat and egg. I'll keep of the egg but now I don't know if/how to try him on the other stuff, and whether I should try him with them directly or me. I am thinking I shoul start with him, because if I eat dairy for example, it will take 3 weeks to leave my milk, is that right?

The consultant seemed a little unconvinced by the whole reflux/intolerance thing. He said we should be fine to introduce wheat etc and that he will prob grow out of the reflux in a few months. And that I should wean off omeprazole as it can actually do more harm than good with preventing allergies.

I'm scared of it all tbh. He also advised introducing peanuts ASAP as egg allergies often lead to but allergies. I have him peanut butter today and he loved it, but then I panicked and I'm convinced I saw a little hive/ulcer in his mouth. But te test was negative, so I'm just being overly anxious, right?

He didnt mention me seeing a dietician or neil shah, although I think maybe I should. dH thinks we should plough on and stop imagining problems where there are none. He thinks this is my anxiety going into overdrive. Maybe he's right! But maybe he's forgotton how bad DS was just a couple of weeks ago.

Maybe it was simply the egg in my breast milk causing the reflux! But he only had a small hive from the egg test, so unlikely?

Argh I'm goin crazy worrying about it all. I never even considered allergies when weaning DS1. Now it's taken over my entire head space!

Hello again
Sorry you didn't get many answers allergy tests often don't show up anything if the reaction is purely gastro, leaving you with glorified trial & error (technically known as elimination & challenge). You really need support to manage it as it's mental. A session with a good paediatric dietitian should sort you out - they can give you proper Neocate, weaning & reintroduction advice. Rosan Meyer is just the best. Jackie Falconer is also excellent. Both see private patients. PM me if you'd like their contact details.

Thanks for your messages Zam.

I am seeing the doctor here tomorrow for a dietician referral, hopefully. We have had a little set back today. I have given him porridge fingers (spoon refuser!) for 2 mornings in a row to test gluten but not wheat. He hardly ate any tbh but seemed ok. He;s been pretty grumpy with a cold so I should have waited but too late. Anyway, I had 2 nairns oatcakes this afternoon as well.

This evening after his bedtime feed he was just like he used to be, writhing and arching, crying, unable to fall asleep. We have had relatively peaceful bedtimes for a few weeks now, since I cut out gluten. DH says its a coincidence, he has a snotty cold and is really overtired from the clock change, so could have just been protesting at life in general. But it seems like too much of a coincidence to me...

I'm feeling very sad about it all, about how hard it will be for him if he has to avoid egg and gluten for how whole life... and just feel like I have this mammoth mountain to climb trying to figure out what is wrong and where to go from here....

Hi ilove I'm late to the thread but just wanted to say don't worry about what the future may hold. Many of the children with intolerances outgrow them as their gut matures. My ds2 had horrendous reflux and turned out to be intolerant to dairy and soy, even tiny traces in breast milk would set him off despite being on Omeprazole. He totally outgrew it by 2.5 and now lives on cheese sandwiches and yoghurt. Don't waste energy worrying about future stuff that may not happen, just deal with now.

Thanks baking. I know you're right. DS is also on omeprazole so I was surprised at his reaction tonight. Its hard as there are always so many factors with babies to consider.