Please help, I just don't know how to stop my baby hurting

[2crooners]

Hello, I've posted about this before but it's getting worse and I just don't know what to do. My baby is 13 weeks and she hates breastfeeding at bedtime, she comes on off screaming and throwing herself about, but seems desperate to feed. She really seems to be suffering and I can't stand it. I don't know whether to stop breastfeeding but I can't get her to take a bottle, I've just spent £45 on cranial osteopathy which seems if anything to have made her worse and she got so upset during the session we had to stop, I'm trying not to drink dairy to see if that helps, she is on medication for reflux 0.4ml ranitadine three times aday but I don't think it helps, we are waiting for a peadiatric referal but doctors and local breastfeeding councellors don't know what the problem is and although they try to help they haven't really got any suggestions. She sleeps well at night, not much in the day, she has one night feed which almost always goes smoothly but from breakfast onwards until bedtime things just get progressively worse as the day goes on. She is sick after most feeds and up to an hour afterwards, fresh milk and later curdled milk but doesn't bring up whole feeds, she is windy but seems to bring it up ok, she only has one dirty nappy a week, but doesn't seem constipated.
I am running out of ideas but she is obviously in pain and I need to help her, breastfeeding is becoming a nightmare and if I could I would stop but she won't take a bottle and I know that breastmilk is best for her anyway but I am hating feeding her because it is such a miserable experience for both of us. Also her weight gain is really slow, she was 8lb 9oz (75th percentile) at birth but now is only 11lb 7oz, on 25th percentile. I don't know if there is a problem with my milk supply but I have been using a supplementary feeder (bottle with tiny tubes taped to nipples) at bedtime from which she usually takes an extra 2-3 oz ebm but it doesn't seem to make much difference, she still cries and struggles
If anyone has any similar experiences, suggestions or solutions please post as I feel really helpless and I just don't know what the problem is or what I can do to help her.

phew, it sounds like you're having a tough time of it right now.
I am no expert, but I would go back to your GP and let him/her know that her reflux medication isn't working, which I assume it isn't if she is still bringing up feeds.
as for your supply, supplementing won't help I don't think, you need her to feed as much as possible because it works on a supply and demand basis so the more she feeds the more you'll produce.

With regard to the CO, did you only have one session? It can be distressing at first and it's good that they stopped as she was upset but it really does need several goes and they do usually say that babies may be worse after the first lot.

Have you tried feeding in different positions to see if it's more comfortable for her?

it does sound like reflux. my ds had it although we managed with positioning and didnt need ranitidine. maybe you could get another opinion on the dose. i tried bottles of formula and it didnt help. i found tilting the mattress, feeding sat up so ds was more vertical and resting him upright for 20 - 30 mins after a feed all helped. if your dd is throwing up most milk that could explain the weight issue. maybe a second opinion from a gastrointestinal paed specialist might help. my ds wont take a bottle now either. i found small frequent feeds helped as there wasnt as much to come out and winding halfway through a feed. i also found i handled ds very gently after a feed to try to stop any spillages. HTH

Hiya
Not sure which counsellors you have seen but this certainly sounds like something they should be able to help with. Have you tried the Association of Breastfeeding Mothers: 0870 401 7711 or the La Leche League: 0845 120 2918 there are also counsellors oneline at www.iwantmymum.com
If it is true reflux formula can make the problem worse as it can irritate the gut further and cause more refluxing due to the faster flow they have less control over.
If its not reflux its an issue a counsellor really should be able to support you with so if you havent I would urge you to try the above helplines.
Really hope you get the support you need.

there is also a FAB site which has helped me tons www.iwantmymum.com
part of the site is subscription only, but the breastfeeding forum is free.
Not to say that there aren't fab people here who will give great advice but iwmm does have some incredible bfc's on board who may be able to give you some more help

Hiya,
Sorry but I have more questions rather than answers.... hope you don't mind!
Does your lo latch on well but then come off screaming? When she is feeding does she actively gulp/swallow? Are you feeding from one side or two? Have you tried different feeding positions? Sometimes changing how you hold your baby can improve how they feed and make them more comfy... more upright positions can work better.

Here is a link with more info on reflux and BF that you might find helpful
www.kellymom.com/babyconcerns/reflux.html

Hope things get easier soon
Kate

Thank you so much for all suggestions, all really appreciated. I will check out the websites recommended.

I have already contacted LLL councellor a few weeks back who was really supportive and sent lots of great leaflets and personalised advice but to be honest nothing has really helped.

Hairymclary, thanks for the advice re CO, I have another session booked for next week so I will see how that goes, but it's helpful to know that I shouldn't necessarily expect an instant miracle cure.

KatieFlower, I have tried lots of different positions without much success, she latches on quite well although I think her mouth could be open wider but this has been checked by local BFC and seems to be ok. She feeds from both sides but seems much happier on the right. When I express I can only get 1oz from left breast but 2-3 from right. At night feed she sucks and swallow continuously for up to 20 minutes, during day she sucks frantically but then tails off or gets upset after only a few minutes. My dd1 (now almost 3) also had reflux, so through habit I have always fed dd2 in an upright-ish sort of position and try to handle her gently after feeds and keep her upright. What doesn't make sense is that she is perfectly content to lie flat at night and after the night feed goes down again without a murmur (for which I am unspeakably grateful by the way!)

Sorry if previous post sounded a bit manic - was written directly after hideous bedtime battle, I am feeling a bit calmer now but would still really like to figure out what the problem is. I know deep down that formula feeding is not a solution but at the time it feels almost as if it is my milk that is causing her all the pain....

when was your dd prescribed the ranitidine and how long has she been on it? Ranitidine is VERY weight dependant, even if your dd has gained only a pound since it being prescribed, it can stop it working properly, the dosage needs updating regularily - also, it can take a few weeks to actually start working. Ranitidine works by shutting off SOME of the pumps which produce acid in the stomach, so it only inhibits the acid production and will not stop the actual vomitting. There is a drug called Losec which actually stops the acid being produced at all. I would push for a consultation with a paediactric gastroenterologist, as someone else has suggested, as hv's and gp's don't know a lot about reflux and tend to be dismissive in my experience. Reflux can often be linked to dairy intolerance, so you could try going completely dairy free to see if it helps (again could take a while to see any difference as dairy lingers a while in the body).

My dd was ff, so I can't help with the bf side of things, I'm sorry, but she also was in pain and was vomiting CONSTANTLY (it seemed, certainly several times a day) for the first 11 months of her life. She was born on the 50th centile and dropped down to the 2nd centile at one point- she is now on the 75th since stopping vomitting! It will end and you will look back at this period of your (and her) life as some kind of strange dream - sorry, nightmare! I know how helpless and scared you are feeling, I remember many days sobbing over my failure as a mum because my baby was losing weight constantly and was so unhappy and in pain. Luckily I was taken on by a special care midwife who worked closely with a paediatric gastroenterologist who we got to see quickly and she was kept up to date with ranitidine dosages etc which did help after it kicked in. Sorry if this is all a bit rambly, hope some of it helps - I really feel for you. x

if she's not sleeping during the day, she must be incredibly overtired and frantic which is prob adding to her distress as the day goes on

how many times are you feeding her during the day? I know people will come on here saying demand feeding is best but when they have bad reflux, any over feeding can really hurt them and make things worse (although it doesn't sound like you overfeeding at all).

I would push with the GP - she does sound quite similar to my little one at that age and she turned out to have a milk, egg and soya allergy. You say she takes a supplementary bottle (with breastmilk) but not one with formula in? what happens when you give her the formula?

If she is losing weight or not putting on as much as they think she should, you should have no trouble getting a referral but if I was you, I'd push to see a peadiatrician now rather than waiting.

the night feed thing is strange though (as mine would def have puked up if I had lay them flat after a feed day or night!)

Ditto Foxinsocks advice, esp re dairy intolerance, unfortunately you have to do more than stop the obvious things like milk, cheese yogurt etc, but actually cut out lactose, whey, and any milk proteins from your diet.

If you can do this for a week, there should be a big improvement if the reflux is allergy related.

Cranial osteopathy helped my dd1 a great deal, but only after we'd sussed the dairy/egg allergy thing.

I know how hard this is for you 2crooners, and also how frustrating it is waiting for referals. You will get to the bottom of the problem, and it will get easier.(I know every evening lasts a lifetime) Good luck x

Thanks again everyone, it's so nice to know there are people out there who want to help, I'm really grateful for everyones suggestions and support. Peggotty, thank you for the stuff about Ranitadine, it's really helpful.

MissyCocker, I have cut out cows milk (and other cows milk products) since saturday but have been drinking goats milk. Do you think I should cut out all milk and just use soya? I'm vegetarian, just to make things even more complicated, so I usually rely quite heavily on milk and cheese.

I think I'm going to go back to the doctor to talk again about medication and try to push for a quicker referal, I keep thinking that if an adult was in pain every day then something would be done about it sooner (or maybe not...?). We had a peadiatric referal for dd1 which took months to come through and then when we finally did get an appointment it was a locum, in fact in total we saw three locums, who all said different things...but hopefully this time it might be better. Off to bed now I think....thanks again to everyone.

Forgot to say, dd2 hasn't ever had formula as she won't accept a bottle, despite endless attempts with every possible bottle type. I have only been supplementing with ebm using the hideous supplementary nursing system (tubes taped to nipples, bottle on string round neck) because I find it reassuring to know that she is definately getting something at bedtime as it feels that she isn't getting much from me...she does actually have to latch on though so hopefully still getting some from me too. So I don't know how she would react to formula but I'm guessing that if cow's milk in my diet is a problem then normal formula won't help at all?

tbh i wouldn't bother with formula at all. breastmilk is the best thing for her. if she has reflux then she will bring ANYTHING up, so please carry on breastfeeding.
You just need to remember that it isn't your milk that is doing this to her.

2crooners, you can get formula that is cow's milk free, we were given that for my DD as they started to go down the intolerance route, but it made her vomit even more, it was absolutely vile (nutramigen)! Hairymaclary is right, persevere with the bfing, she would probably be vomitting anyway, and at least you have the option of changing your diet in order to be able to continue bfing. Good luck.

oh I wasn't suggesting you gave her a bottle just in one of your posts, you suggested she wouldn't take a bottle and I wondered if it was because it had formula in but if it's a general don't like bottles, then that's fine!!

if she is OK at some of the feeds and not at others it doesn't necessarily point in one direction but I would definitely push for the referral

also, try and get her to nap in the day - even if it means you taking her out for long walks to make sure she does sleep because when they are overtired, it can make feeding incredibly frantic

good luck, let us know how it goes

Random thoughts now but...
When she comes of screaming in the daytime do you try and attach her to the same side... or a different one? When you feed at night are you feeding her lying down?

Just wondering whether despite her slow weight gain she is struggling with your flow in the daytime and maybe feeding lying down is using gravity to slow things down.... if you are feeding sitting up in the nighttime then maybe this isn't the case

One other thing that crosses my mind.... I know she is quite young but my dd2 was distracted during feeds from a really young age - have you tried feeding in dark quiet places in the daytime?? Appreciate this is difficult if you have a toddler.... must admit to using TV as a toddler-pacifier sometimes

Hope you get some help from your medical professionals... do read as much as you can though as being pre-armed can help you to ask the right questions

another thought as to what might help during the day, if you can carry her in a sling like a wrap sling that you can tie in different positions then this can help with the reflux. they can feed in it and therefore are upright after every feed, also she might get great comfort from being close to you and may well fall asleep in it. it also means you can still get on with jobs as your hands are free

Thanks again everyone,

Katie Flower, I feed her sitting up and upstairs alone whilst dh baths dd1 so I don't think it's position or distractions that are causing her problems, but thank you for the suggestions, I appreciate it

Foxinsocks, she will sleep in the day in the pushchair and car and will have short naps at home with a bit of persuasion, it just feels like she doesn't really get any decent deep sleep during the day. I think you are right though, I need to try to get a better daytime sleep routine in place as she must feel terrible by bedtime.

Having said that, I'm really starting to think it could be dairy related reflux, I've been cutting out cows milk this week but am now thinking I might need to take it further. I'm going to do some more reading then see the GP again next week to push for a quicker refereral for pead/allergies.

Thanks again to everyone, I'll let you know how I get on.....

2crooners - have just had a brief read through your thread. I agree with others about not stopping BF, we FF DS who had reflux but he still vomited after every feed and was still in pain. Sleep wise during the day have you tried wearing a wrap? This really helped with DS as it meant he was upright and got to feel cuddled - he'd usually drop off quite quickly and I'd still have my hands free.

Can I just ask a few quick questions - does DD projectile vomit or is it more of a steady light flow every few minutes?
Has she stopped gaining weight or lost weight at all?
How often does she poo?

Sorry if I've repeated anything.

hello liquidclocks,

no she doesn't do projectile vomiting fortunately, it's just enough to require a change of clothes (hers and mine) during, after or up to an hour after a feed. She is gaining weight very slowly but hasn't lost weight and she only has a poo once a week but doesn't seem to be constipated.

To be honest I don't mind the vomiting or the laundry, it's the struggle to get her to feed and crying in pain that is unbearable.

2crooners - another one here who would recommend going the whole hog with giving up dairy. Discovered at 15 weeks that DD was milk intolerant, and apart from the fact that she was still piling on weight, she sounds quite like your DD. Went on to discover a few weeks later that she also has silent reflux, so at least you already know about your DD's issue with this. Is she taking Gaviscon as well as ranitadine? We're just on Gaviscon here as paed appointment still a week or two away, and my GP won't prescribe zantac without paed diagnosis. Anyway, I'm going off the point - sorry!

I wouldn't substitute soya products initally, as around 30-40% of babies who are milk intolerant are also soy intolerant. You could try rice milk or oat milk (seems to be becoming more widely available) to be sure that you are seeing true results, and if she improves then you could try switching to soy to see if she reacts badly or not.

One of the tests that the paed (we've spoken for initial diagnosis, although not seen yet) asked me to do at home was to get regular cows milk and smear it on DD's mouth. Not all milk intolerant babies get hives from this (DD didn't), but many do, so it may help you to see if she reacts or not.

I hope things ease for you soon - I know how incredibly difficult it is to live through all of this.

Hello CSWS,
Thanks for the advice, I read one of your posts which came up when I was searching MN for milk intolerance, hope things are improving for you and that your pead appointment goes well.

I'm vegetarian so now I realise that it could be milk, eggs or soy it's getting harder to cut out all the potential allergens and maintain a healthy diet, so I'm thinking I might wait and see what the peadiatrician says as this week of cutting out cow's milk hasn't really made any difference so far. I still have a feeling that she might be dairy intolerant though.

I saw the doctor today after another morning of crying and refusing to feed. She was brilliant and really understanding. She is going to try to speed up my pead referal as dd2 was just crying her little heart out in the waiting room. She also prescribed Losec and Domperidone and said to stop the ranitadine as it doesn't seem to be working, so fingers crossed there might be some improvement. I gave her the first dose tonight but still had a particularly bad bedtime and I still feel a bit uncomfortable giving loads of different medicines to such a young baby, but if it helps.......

Hi 2crooners, sorry to hear you had another bad night with dd. I think what you've said is really sensible, I was uncomfortable giving medication to ds but as you say, if it makes them more comfortable then it's worth it. I'm pleased to hear your GP is understanding and trying to speed up your referral. We were 'lucky' - ds went all floppy due to lack of food and we ended up on the children's ward and got to see a paediatritian straight away. Would your GP consider admitting your dd do you think?

Also personally I think not changing your diet it sensible at this stage (I know some people may disagree but ds had all your dds symptoms and it was nothing to do with diet, just an immature stomach). It might end up affecting your health and when your BF it's important that you stay as well as you can. The doctors will be able to test for dairy intolerences soon and will be able to refer you to a dietician if you do need to make changes.

Thanks for answering the questions. It's just that there's a condition called pyloric stenosis which has similar symptoms to reflux and one of the signs is not pooing enough, however it does tend to make the baby projectile vomit. I'm sure your GP has considered it.

Good luck with the new medication, hope you get to see the paediatritian soon. It does improve, stay posistive!

Thanks liquid clocks, it sounds as if you have had a terrible time yourself, hope things are better now

Tonight was a definite improvement, but I don't want to count my chickens just yet..........!