Will it be possible to keep bf? At my wits end :(

[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.

poor you i have no idea how to advise you but didn't want you to go un-noticed, my instinct is breast is best and mother nature would instinctively adjust it to baby's need but like i said i don't have any experience. I only know of my sister whose DD had reflux but she was FF and a friend who did BF but wasn't as bad as your poor DD sounds. Really hope someone will come on and offer some advice for you. x

this is terrible for you and your little one . I would say stick with your mummy instinct. you are with your dd 24hours a day you know something isn't right.

Not being able to stay awake for more than 90 minutes I would say is not that unusual at this age.

Are you absolutely sure she was constipated on the meds because some bf babies do go 1-2weeks without a poo it could be the meds were sorting out some of the problem and she was having her normal cycle but only you will know whether she was uncomfortable with not being able to go.

I would say that until you know if it is allergies or not continuing breastfeeding may be the best way to go because standard formulas contain cows milk obviously so if she is intolerant to that she will be worse.

I would say stamp your feet until you get her tested/see an allergist. I had denials from all corners that my sons eczema, inability to sleep due to wind and tummy pain, was due to allergies. I finally got him tested and he has a whole list of allergies dairy, egg, soya, wheat, peanut, rye, linseed and that's only the ones we know about now. Hope your appt went well and they listened to you.

The sleepiness is not that uncommon at this age. DD3 was a sleepy baby and at 14w was about the same. At 15m she likes 2-3 naps a day still.

Have you tried changing position when you feed? With reflux it helps to feed them upright and stay upright for 30mins or so after the feed. If you sit her astride your knee facing you(obv) and let her latch on sat up then slowly lean back and get comfortable it could help.

She may be more uncomfortable on her back so how about a good sling for taking her to and from baby groups. Still take the pram as she may sleep there as well but a sling makes them feel more secure, they are also upright so should help with any reflux.

Green poos aren't a problem but slimy poos are a sign of an underlying infection. If she is allergic to things you are eating then nag, nag, nag to get her allergies tested.

Please don't give up too soon, if you are happy to make adjustments to your diet and it is feasible she will be better with breastmilk

Hope you appt went well

Appt went ok. The consultant is not an expert in this area but from what I told her alone has diagnosed cmpi.
She was really good. Said I can have nutramigen if I want but encouraged me to keep bf which is what I was hoping for support with. She is referring me to a dietician to help me with exclusions.
She said it isn't possible to allergy test a baby so young though- anyone knowanything about this?

I am already doing absolutely everything for her reflux. We feed with her sitting up and have been doing so for a while. She simply won't be in the pram so I never use it apart from to carry shopping. I carry her in a mei tai sling.

Doc has upped the dosage on the ranitidine and domperidone as her weight is increased and I believe they are doing something to counteract the severity of her symptoms. It was only the gaviscon I stopped and yes I am sure it was that causing the constipation, as soon as she was given it the first time from the gp it happened so I took her off after a week of no pooing. She usually goes after most feeds still.
It was in hospital at the start of this month it was reintroduced on the max dosage and she went from pooing all the time to not going for over a week!!! She was in so much discomfort.
Within 3 days of me stopping the gaviscon she went again and then gradually back to normal over the following few days. So yes I know it was this.
It was doing nothing for her sickness anyway.
Consultant had no problem with this said it is a common side effect and dd's symptoms are too severe to be managed by it anyway.

So now I just need to manage my diet now.
It's just the not eating out I'm finding hard.

Anyone with experience of doing an exclusion diet for bf??

Should I just carry on how I am with no milk/soy or crank it up a notch and exclude wheat/eggs aswell. I suspect she has reacted when I've had these. Aswell as tomatoes and onions. Oh and rye.

Hi TinyDiamond,
Am so pleased your appointment was a bit more use. Sounds like you have had a really horrendous time.
There are lots of 'us' doing exclusion diets and breast feeding. I reckon it's worth you starting a new thread with that in the title. My son was diagnosed with CMP allergy and I started a new thread and got tons of good advice about an exclusion diet, may be worth searching my name for the thread? Good luck, got to go,baby wailing!

Hi so glad you had a positive appt. I bf ds until he was 11.5mos when he finally took to the nutramigen (I didn't want to extend bf beyond a year). Excluding all dairy, wheat and egg was sufficient for ds eczema to clear and for him to be much more settled. I think these were the ones that I was eating most of and the soy etc. was so minimal it wasn't an issue.

It actually becomes surprisingly manageable and was good practice for managing ds diet as he weaned, even eating out although it is quite restrictive it is possible I always found Indian restaurants really good because they seem to know exactly what goes into their food.

I knew at 4mos that he was allergic to dairy but they wouldn't test then as he was too small, ds finally had blood tests at 7mos. Although the consultant wasn't keen we had just had a big reaction to wheat (didn't know about it before) and I really pressed home that I was pretty scared about what I put in his mouth. The other thing is once they are diagnosed you can get appropriate medication to deal with any reactions.

There have been a number of threads about alternatives to eat such as oat milk, coconut milk etc. have a look they're really good.

Your story brought back all the memories of the first 6 months of my DS's life -- feels like I could have written it myself. I exclusively bf'd until he was 24 weeks old, and by that time had eliminated so much from my diet that I lost loads of weight and pretty much all of my sanity.
I would have liked very much to continue breastfeeding, and really admire those mums who do, even with a restricted diet. But I couldn't hack it any longer and had to go back to work, so I weaned my DS onto a hydrolyzed formula suddenly, in the space of one day. Things improved greatly after that. I still feel a pang of regret that I didn't continue breastfeeding, but at the same time I can't deny it made a big difference, and it let him and me get more sleep.
I'm not saying weaning is necessarily the way forward. Only that if you do decide to do that, you would be more than justified, judging from what you have experienced.
I wouldn't worry about the 90 minute awake window -- sounds perfectly normal to me. In fact, my brother who has three kids reassured me about exactly the same thing! And also the problem-solving nanny who helped me wean DS !
Sending you lots of sympathetic vibes. Reflux is just awful. By the way, has anyone talked to you about omeprazole as an anti-reflux med?

Hi everyone, thanks for your support- really great.
Feeling a bit more positive today as we're having a better time. Dd hasn't screamed with her usual pains today although just been screaming for other reasons. She only wants me at the moment and cries if I put her down or if anyone else holds her. Totally understandable as she's had a tough time of it. So far today I have managed to have a bath. For 10 mins. That is it haha! Oh well.
I also think she's teething quite badly, have given her a bit of calpol.

I will start a new thread re diet and see what tips everyone has.

I do not know much about omeprazole, what is it meant to 'do'?

Omep is often used as a next-stage treatment after ranitidine (and often combined with domperidone). It's a proton pump inhibitor, which means that it shuts down acid pumps in the stomach and so reduces gastric acid secretion. It's not licensed for babies under 1 year but is nevertheless often prescribed for them, because it works when other meds stop working.

I really urge you to read this book. Ignore the sleep advice if you like (I did) but it has an amazing chapter devoted to reflux. When I read it I could have cried because it was as if the author had been a fly on the wall in my house. It has a lot of information about reflux meds as well, and how best to administer omeprazole to babies if they are prescribed it.

As for an exclusion diet, why not try Tanya Wright's book Food Allergies? I think you can get it on www.allergybestbuys.co.uk and it's pricey, but she has all sorts of advice about how to cut out the major allergens and still have a good diet. There are also two good cookbooks for allergies by Alice Sherwood and Lucinda Bruce-Gardyne. Wish I had known about them while I was breastfeeding!

HTH! and

Is that a cup of tea with rice milk? Ta very much!

Garliclover!!!! I bought that book on your recommendation and I actually did cry last night as I read the chapter! It is like describing my dd perfectly. I haven't finished it yet but wanted to say thanks.

Overwhelmed with how many of the 'symptoms' she has. Ie all but 2 over 3 pages!

I just found it oddly reassuring that my DS's symptoms were not completely weird or unusual, iyswim, and that they were actually understood by someone who had seen it all before. Trying to explain it to my friends whose babies were all gurgling happily away, I felt as though they thought I was just making a big fuss out of a bit of colic. But this book was my proof that reflux does actually exist! (should have shown it to my GP at the time...). Hope your exclusion diet is helping things, and that you might get to have a longer bath soon! x

To be honest, I'm having a really bad time again. Friday and Saturday I thought I'd really cracked it. It was like I had a different baby. Smiling laughing being able to be on her back-no nightmare nappy changes. It was lovely.
Everyone commented on how different she was and I was so pleased.
But she has had a major reaction today to something I had yesterday/last night and we are literally back at square 1.
She hasn't stopped screaming all day. We had something planned that I'd been looking forward for weeks and I had to cancel as she's been so unsettled.
She has sicked through every last bit of her bedding in the house, and we have ALOT. I'm onto pillowcases and Muslins over her mattress now. But she keeps being sick under her face frequently and waking up screaming (she sleeps on her front).

I really dont know how much more I can take. She must be so, so sensitive to be having such extreme reactions when I'm eating so cleanly. It really isn't fair.

I think I need to just get a gp appt and get the special formula. I'm pretty much surviving on rice products and veg as it is and I feel awful and run down in myself.

Feel totally totally trapped

Oh tinydiamond -- so tough on you and DD. Reflux is just horrible. I know I can't say anything to make this particularly horrible day better (and people looking on the bright side of things are just downright annoying sometimes) BUT from what you said on Thursday's post, it does seem as though the general pattern is getting better, and I think it's important to look at that when you've just crawled your way through a hard day and can't see your way out. A whole two weeks' improvement can seem insignificant sometimes, when you've had to hear your poor DD suffer for a whole day. But you're doing all you can at the moment, and sacrificing an awful lot to keep breastfeeding and doing the best you can for her.
Not being very coherent here as v tired but just wanted to let you know am thinking of you!