food intolerances? ebf, crumbling under stress don't know what to do LONG

[TinyDiamond]

Dd is 14 weeks now. Since birth she has suffered with 'reflux' which noone took me seriously about. After 7 visits to my gp leaving empty handed, oh no actually the last time I left with a 5 day worth prescription for gaviscon. We ended up in a&e at 11 weeks as dd was the worst she'd ever been literally couldn't keep anything down and screamed for 48 hours.
I took her down there as she had vomited so much that the sick was bright green. She was admitted, and the paed the next morning finally listened and started ranitidine and domperidone along with gaviscon.
Ended up staying in 3 days whilst she was under obs for the new meds.
Discharged went home and waited for meds to work. But they never really did. I kept thinking give it another day, then they'll work.
After 5 days I had to stop the gaviscon as it literally made her so constipated we didn't know what to do. In hospital she was pooing after most feeds, usual for her. But as soon as she started it again she Didnt go for 5 days.
The ranitidine and domperidone did sort of seem to make a difference with the amount that she was sick. Also when it was coming up she didn't seem so distressed. However what it made absolutely no difference to was the pain she is obviously in between feeds.
Around 30 mins after feeds she becomes very distressed and gets so worked up literally nothing will soothe her. She also wakes up sometimes very suddenly crying, not whimpering that she's hungry but full on crying very sudden.

12 days ago I decided to eliminate all milk and soy from my diet as my instinct is that she has food intolerances. It took a while to see any difference but after a week we had a couple of better days until Saturday when she really has disagreed with something I've eaten.
I know for SURE I had no milk/soy so it must be something else.
The other thing is that last Thursday she had a reaction to something and her eye swelled up quite badly and was red until the next day. She was very distressed and cried alot.
I have taken pics to show the paed.

I am literally at my wits end and don't know what to do. I really want to carry on bf but not sure how much I can take of this. I don't mind cutting things out and am (trying) to look after myself, taking a calcium supplement etc but I feel like the stress is slowly killing me. I cry most days with frustration as I don't know what to do to make her feel better.

I like to be quite active but I feel like every time I take her out the house all she does is scream and scream and I can't soothe her at all.
She will not take a dummy at all, sucks her thumb when sleeping and when she is calm but if she is wound up she can't find it.

She also is incapable of being awake for more than 90 mins at a time. She's been a very sleepy baby since birth but I feel like compared to the other babies in the groups I know of exactly the same age she is either sleeping or screaming when we go anywhere.

Today she woke up at 6.40 fed, went back down at about 7 until 9.15, fed, by 1040 she was distrssed with tiredness and I put her back to sleep. She was up at 12.15, fed twice in an hour then by 1 really needed to be back asleep again. She woke up again for another feed and a few vomits and is now down AGAIN. she only ever stays asleep a few minutes until I have to rock her/wheel pram to get her off again. Also needs constant White noise blasting out.

We have an appt at hospital with the paed tomorrow although I know this doc is not one of the people at all experienced in intolerances/allergies. I am really hoping she'll refer me. If not what do I do??

So sorry this is long I just feel so helpless. Sleep deprivation and constant stress is ruining me completly.

Going to post in both allergies and feeding so hopefully someone will read.
If you have got this far thankyou

have just read this back. Other info I meant to add is that there have been no issues with weight gain. Infact her weight gain has been brilliant which is why nobody seems to think there is a problem.

Her poos are often green, I would say 50% of the time green 50 yellow as they should be. Always thin or consistency of hair gel.
They stink even though she is ebf-smell very acidic like vinegar.

Hope she#s better soon, just wanted to say that at her age, bf babies often don't poo for up to 2 weeks so it may not be the gaviscon bunging her up.

Milk can be in all kind of things that aren't obvious - ketchup, biscuits, stock cubes, processed meats, veggie meat substitutes/quorn. Your dd might be sensitive to even very small amounts.

It was definitely the gaviscon doing it as she had been prescribed it before-became very constipated and distressed which is why I took her off. It was when we went into hospital and it was re-prescribed the problem came back. Also the consistency of her poo was being changed by the powder.
Within 3 days of me no longer giving it to her she was back to her regular rythym.

Aware of all the hidden milk protein as whey, casein etc etc which is why since I've started eliminating I have cooked everything from scratch myself. The night in question I'd had tomatoes, onions and corriander all of which could've upset her. This is why I think it is in addition to any possible milk/soy intolerance :(

Is there a bfing counsellor or IBCLC you can contact in your area that could give you help in working out the triggers? I have heard of women going on exclusion diets but they have done this in conjunction with support from dietitians/HCP so that they don't deplete their body of nutrients.

Lots of info into bfing babies with intolerances here

Oh you are having a terrible time :(

I know that you are finding this so hard, but if you possibly can, try to think of it that BFing itself almost certainly isn't the problem even if it's something in your diet causing the problem. Bear in mind that the alternative would be an artificial non-dairy milk which will nourish her but have non of the other stuff that BM does, giving her some protection from allergies and intolerances in the future.

You are right that Gaviscon can cause horrible constipation.

Wheat might be another consideration but as truthsweet says it's worth getting a dietician's appointment to work through an elimination diet (although you can start straight away as long as you don't stay on it more than a couple of weeks without further advice).

Saying all that, lactose intolerance can cause some of the symptoms you mention. It's really rare unless it's caused by something like a tummy upset (in which case it's transient). If it IS LI then you're going out of my area of knowledge but the treatment then MAY be moving to a non-milk formula, or IIRC there are treatments/drugs that can be given pre-feed to counter the lactose. I'm afraid you need some specialist medical advice there.

I really hope you get some help soon. Please let us know how you get on.

You sound like me last week. DD2 is 5 months and has reflux. I did a total elimination diet to try to help her reflux. At my strictest I was eating lamb, potatoes, rice, butternut squash and courgette - and she still wasn't better. I am lucky that I have a fab GP who gave ranitidine first at the max dose. That seems to make the pain go away mostly, but she is still sicky.

But for the past couple of weeks she has been dreadful - in pain, lots of exploding forest green poos, lots of sick. Plus I was on the diet. Finally my DH just said it is ridiculous that I'm on this diet yet it still isn't working. So I stopped. She hasn't got worse and in some ways she is better.

The problem is that once you start saying that what you eat has a direct affect, then you are responsible for everything. The guilt is overwhelming. Every time DD2 was in pain I felt guilty - what did I do to cause it? But I have had to rethink things. Maybe she just has an immature gut. I know she has had a cold for a few weeks, that virus could have caused problems. There are just so many variables that it could be.

I'm not saying your LO doesn't have allergies/intollerances, but just be kind to yourself. You may not be able to fix things just with diet and you haven't caused this by eating a normal diet.

I hope the paed goes well tomorrow and you get some answers. It is really hard when your LO is ill/out of sorts but you can't fix it. btw, gaviscon bunging them up is a known side effect. It's why I didn't want it for DD2 - DD1 was just horrible on it.

Tiny - were you going to try 'block nursing' at one point? Did it do any good?

Hi tiktok. Yes it was indeed me who was suffering with horrendous oversupply which thankfully righted itself 2 weeks ago now. Since then the actual feeding has been going fine, for the first time ever. So the reflux definitely isn't just caused by that.
I ended up using 7 hour blocks for about a month, now I still only stick to one side per two feeds and it keeps it completely under control. I am also able to pump once a day comfortably. Although, milk in freezer totally useless now due to elimination diet.
So, so difficult to try and figure out what it is. I know I shouldn't feel as if my milk is hurting her but every time I eat anything I question it and seem to be running out of ideas. I have also cut out wheat but not gluten, still having oats. Am on day 7 of no wheat.

I'm not expecting too much from appt tomorrow as the consultant I'm seeing is not an expert in allergies/intolerances. What I want her to do is refer me to the allergy clinic but I know this is against procedure so fully expecting her to tell me I need to return to gp for the referral. Then I'll be back to square 1. Feel so worn down

I believe it can take upto 4week's for dairy to completly clear from your system. So if you have seen an improvment already keep with it as things could still get better.

Good luck with your appt tomorrow.

Another thing I remembered last night. My Health visitor (who is fab and lovely) said that food intollerances/allergies show up really clearly in babies skin as excema. It is a good way to see if your diet changes are working quickly. And if your baby doesn't have excema, then they probably don't have allergies/intollerances. DD2 has lots of viral rashes, but hasn't had excema - so another reason why it wasn't worth me staying on the elimination diet.

If your paed won't refer you, would it be worth asking for a private referral? It might cost a bit, but they would see you very quickly rather than wait for another fight with the NHS.

camdancer, I dont think your HV is correct on that.

Excema is one manifestation of allergy/intolerance but not the only way.

tiny I wonder whether you could donate your frozen milk to your local milk bank? :)

Organic carrot cake I am desperate to donate it and also want to carry on donating. Problem is I'm in Leicester. I have called Birmingham, it's impossible to get there for me with lo for tests and to deliver it I don't even drive. I heard Chester collected so I called them but they said it was too far. Same prob with not being able to get to cambridge. Any ideas????

tiny you shouldn't need to go there for tests, as it all should be ok to do by post. However, getting the milk there is a different matter.

When I started to donate, and I live 1 1/2 hours drive from my "local" milk bank, I encouraged other local mums to do so as well and I took all their milk at the same time.

Maybe if you were able to get a team together you could do the same thing? You'd need volunteers on the team to do the deliveries of course. Your local NCT branch, or breastfeeding groups are a good place to start.

Before you do, though, check with the milk bank you'd donate to that they need to sign on a few more donors.

Tiktok please don't tell me that - I already feel bad enough for going off the diet! It was making me feel a bit better but each time DD2 is sick I think should I start again. Aarrgggh!

Tiny how did it go today?

Sorry, cam :( :(

But honestly.....for a health visitor to say that is really out of order.

Allergies/intolerances/insensitivities can reveal themselves in different ways, and she should not be indicating otherwise to mothers.

My HV has said similar to me about allergies always manifesting themselves in skin problems too. This IS untrue though.

So, today went ok. The paed is good even though it is not her area of expertise. She diagnosed cows milk protein intolerance purely on what I told her so is referring me to a dietician to help me manage my diet safely. I told her about my concerns about other foods being a problem aswell and she said only time will tell on an exclusion diet to see if they are ok or not.

She was supportive of me continuing to bf (which is what I want) but has offered nutramigen or aptimil pepti as a back up that I can ask gp for any time IF I want to. Although I'd rather not. As a side note anyone know who makes them both? I know neocate is nutricia but she never mentioned this. Oh and aptimil is danone isn't it? Just interested in this.

She said that actually allergy tests cannot be done on a baby so young-anyone have any info on this? Or if they even have tests for intolerances at all?

All in all pleased that she is supportive of the bf but still feel a bit in limbo over my diet.

Organiccarrotcake. Could I still be a donor on an exclusion diet or not? I have heard that you can't. The lll cafe I go to, nobody there who could donate as all their children are older and from my antenatal group and other mummy friend circle I am actually the only one still ebf.

Yes, you can still donate on an elimination diet. There may be someone from the LLL group willing to take the milk and your LLL leader may be able to try to recruit new mums. I still deliver milk even though my youngest is too old to donate now but it's become rather more than an informal thing for me . Drags you in, this stuff.