Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

Aww. Bubandbump, sorry to hear you have had afew bad nights. Poor little thing choking, very scary. My girl does the same although settled slightly now. I'm not sure if the meds are working but she did just do her first 4 hour and 45 min sleep last night and then after feed did another 3 hours so I'm buzzing. We are on same dosage as you. I hope u get somewhere with your doc. Let us know what happens.
Goodluck.
X

hello everyone, sorry you've not been having a happy time recently :(

DS is a lot happier now he is getting the right amount of food in him, thanks to the tube although we had palava today as we had to go to the hospital to get it changed (the type we had in only lasted a week, we now have a month-long one) as apparently no one in the area is trained in putting the tubes into babies... so I don't know what we're going to do if he pulls it out.

It looks like he does have the CMPI rash but it appears on the side of his head that is usually pressed against my side during feeding, sleeping and calming down, so I haven't noticed it until now/until he went on aptimil -which confuses me a bit.

As for the weaning, we have tried him with baby rice twice and both times he had about an oz worth of milk mixed with the rice and he seemed quite competent at the whole swallowing thing and didn't really push much out with his tongue, which quite impressed me. I'm taking this to mean he is ready and so I'm going to give him some every day and see how we go.

I'm wondering though if there's an active CMPI thread that I should join since he reflux like symptoms seem to have practically disappeared (not that I don't want to hear how everyone is getting on or appreciate your advice and support)

Hi ladies

Sounds like things are improving a little for some.
We are still in same place with reflux, 15mg of Omeprazole seems to keep the burn at bay, just now trying to control the sickness. The Enfamil formula did not proove popular with my DD, didn't like the taste. So we are now back on the regular stuff with Carobel.
A question for any of you that use Carobel, how many scoops do you put in a bottle? We are currently on 7oz with nearly 2 scoops. She doesn't vomit with this amount, just worried it might be too much and if anything does come back up she will choke!

Well things have moved quickly..

Got an emergence appointment at the GP yesterday and just bulldozed them into a referral to Dr Lindley at GOSH. He had a spare slot so we've been there today.

Basically he thinks her reflux is a symptom and not the cause, he said her sleeping patterns and poo indicates that it's some kind of irritation to her bowel ie. an allergy.

We ebf and have chosen to cut out wheat and gluten as well as soy and dairy to trial for 3 weeks. She won't take a bottle atm and takes a lot of comfort from bfeeding so I don't want to switch to formula unless I have to. He has also increased her ranitidine to 1mg x2 daily and taken her off the domperidone as ranitidine is also an antihistamine and he is treating the allergy not the reflux.

We started this tonight and after 4 nights of hell with a very uncomfortable baby waking every 30 mins, I now have a happily sleeping baby in my arms after just her first feed of the night following a 7 hour sleep...!

Dr Lindley is a lovely guy and just made us feel very comfortable and listened to. We are incredibly lucky that we have private health cover and live in London to be able to go and see him. Fingers crossed now and a VERY healthy diet for me!

Bubandbump that's great news so glad you liked dr lindley. I found him to be amazing . Let us know how you continue to get on. That's interesting about ranitidine- I forgot to ask him why it seemed to initially help J. Now I know why!

We are day 11 on neocate. J seems to be doing well - we need to wait another week or so to start weaning her off domperidone....

Hi all, quick post. Sorry to hear some of you are still going through the mill, and glad things are improving for some.

A was in hospital for 5 days and was doing really well on the new milk and the ranit and domperidone - even her milk intake had increased loads. Put on five ounces in four days whilst she was in there. We had a really good week last week but over the weekend things went rapidly downhill - refusing feeds again and generally being unsettled.

Things have got even worse today - she has not ate or slept all morning ( finally got her to sleep just now ). I have been in tears all day. However, we have just had a phone call from Sheffield Childrens Hospital asking us to go in today for an appointment with the Gastro team there. Could not have come at a better time !!

I am hoping we get the Omep today - we never got it whilst we were in hospital as she seemed to be doing so well on the domp and increased ranit. The OH is at work all day so my Dad is taking us. He won't take any rubbish !!

Will update soon.

hi sbeth ds and I might have been in the hospital at the same time as you guys since we were at Sheffield Children's.

we've been mainly doing 'dream feeds' at the moment as that seems to be the only way of getting him to take the bottle. He was in a lot of pain yesterday with his mouth but doesn't seem to be as bad today, apart from the feeding issue. We see the dermatologist again on Friday for a check-up, hopefully they'll be able to do something about the ulceration.

Guess what though? The community nurse who was supposed to come on Friday didn't (admin error apparently) and when I rung on Monday it was to find out that my local district nurses aren't trained in putting in/changing ng tubes, so I had to go back into hospital to get it done :(

Hi, I posted this in a separate thread but thought you guys might be able to help. Any ideas?

Got DD2 (9 weeks) weighed yesterday. She's doing ok but growing slower than the hv would like. (Started on 50th centile is now down to 2nd.) HV is not worried but said to make sure DD2 gets more hind milk - sounds sensible. Not easy with a 4yo and 2yo running around.

But DD2 has reflux so if she has too much at one time it aggravates the reflux and she is sick and in pain. So any ideas how I can get more milk into her without pain? I really want to try to avoid medication so am already on a total exclusion diet. She is still sicky but I've only been properly milk free for 3 days. (I made a mistake with the milk substitute I was using. Grrr)

TIA

Hi camdancer - just a few quick ideas. Maybe try expressing a couple of minutes before a feed to help your dd get to the hind milk quicker. You can also express after a feed to get the hind milk and then top-up the feeds with it for a little while until your dd's weight gain is a bit more steady (if you don't want to use a bottle, you can use spoon or syringe or even a small cup). Sleep feeding works for my dd, so maybe try feeding yours when she's falling asleep or just waking up, they tend not to feel the pain as much when sleepy and feed better. Allow her to finish one breast before switching to the other, it's more important to finish one and get the hind milk than for her to feed on both breasts. You can also block feed (i.e. do feeds for 4 hours on one breast and then the same on the other, this ensures that your dd gets to the hind milk quicker as there will be less foremilk). Also keep her as upright as possible when nursing (easier said than done with bf!). Feed her little but often as the more often you nurse, the fattier your milk is as there is not as much time for the milk to separate into foremilk and hindmilk. I hope some of these ideas help a little. It's difficult, I know. Good luck!

Thanks for those ideas. I'll give them a try. You'd think after 2 other refluxy babies I'd know by now but somehow each one is refluxy in their own special way!

Hey all Well I am very stressed out at mo. No sleep and my poor girl is still in pain and gagging in her sleep. Back to docs today and she said do I think my lo is getting into a habit of needing to be on me? I couldnt believe it, I said I dont think so seems as she gags, throws up heaps and I can hear the acid coming up from her tummy. She has now said I need to try dairy free diet for a couple of days and if that dont work try formula for a couple of days expressing so my supply dont go......now is it me or is that weird? If these dont work then its to hospital. We still have to give her the meds too.
I am totally hacked off, the doc is useless and I dont know what im suppose to do. Doc said if formula works then we know the cause.....um yeh ok so my milk is making her like this so I just got to give up breastfeeding? Then she said do I have anyone who can come and sit with my lo while I catch up on sleep.....i have no family round here and I couldnt leave my 6 wk old with anyone just yet. Proper ranting I know but i feel so alone on this.

So I am now looking at foods I can have, didnt realise how many foods contain dairy.

Sorry to rant, really hope everyone else is doing ok.

Birchykel, sorry, I don't know your full story but there is nothing worse than a useless doctor. You go to them wanting support and a way to stop your DD being in pain, but it sounds like the doc is making you feel so much worse. Are there any other docs you can see? I know it would be a pain explaining everything to someone else but not all doctors have expertise in the same areas. Another doctor might know more, or at least be more sypathetic.

I'm dairy-free (plus a whole load of other things) at the moment and it isn't that bad. Well the lack of chocolate is very bad, but I just have to live with that! What is hard is thinking that you are causing your DD to be in pain. You aren't. Her digestion is causing that, by going dairy-free you might help out her digestion out. At least that's how I'm selling it to myself.

Hi birchykel, you probably need to cut out soya as well as lots of babies how are cmpi have soya intolerance as well. I've been dairy and soya free since mid May, it's not as hard as it initially seems, you just need to very carefully read all the labels for hidden dairy and you'll be surprised in how many products there is soya!! You just need to make sure you take a Calcium supplement. Also, 2 days is really not enough to see if your dd is reacting to anything in your milk, you need to give it at least 2 weeks as that's how long it takes for dairy (or anything else) to leave your system and hers. Same goes for the formula, the trial is usually a couple of weeks as baby's system needs time to heal. Presumably your doctor meant a hypoallergenic formula? I hope you get somewhere with the doctors.... good luck!

Milamum, no the doctor just said formula nothing about hypoallergenic formula. Also it was me that suggested change of diet, she was against it saying 'well u can't cut out everything otherwise ull have nothing to eat'. I did think two days was abit short I mean I'm not even sure what to eat or drink yet so I've gota go look. I mean does it say dairy free on foods? Or what am I looking for on ingredients? So its a learning process for me too so I need more time. I feel let down, almost everyone around me wants to just give her formula I need support.
Surely my milk is the best thing for her and if it means me changing my diet then that shld help? If it is my milk causing the prob then surely it isnt the case of going to formula? I have to find what works?
Camdancer I am thinking of changing surgery altogether as I feel all the docs at my surgery have the same view, as this is the second doc I've seen and been given false advice. I just want someone to listen to my concerns and help and support me.
This doc even said do I think my girl has got into a habit of being comforted by me.....um Yeh maybe if she wasnt throwing up, choking, and in obvious pain. Seriously I feel so alone in this. How do I get them to listen, they want me to go and weigh her on Monday before going back to the doc, if she isn't putting on enuf then they will refer us to hospital but last time I weighed her was 2weeks ago so she would of put weight on. Plus I've read babies sometimes still put weight on and still need to see a specialist?.

I am seriously sorry for going on, I just need help. This doc has messed wiv my head, I don't know what to do for the best.

birchykel - please don't feel that you are alone in going through this, there is support out there! I think lots of reflux mums find most GPs totally useless, you just have to persevere and not let them fob you off. Now, onto your questions...
I think that breast milk is the best for reflux babies cos it's easier to digest so please don't rush to change to formula without trying the elimination diet. The doctor is talking rubbish about you not having anything to eat. I went through the Total Elimination Diet where I ate nothing but rice, potatoes, squash, lamb, turkey and pears for 2 weeks and then slowly re-introduced different food groups to see if dd reacted to any particular one. More details on this diet here - www.askdrsears.com/topics/feeding-infants-toddlers/food-allergies/elimination-diet. I'm not saying you need to do this, just that it's possible and not that hard.

If you decide to trial formula, there is no point using the usual type as they are all cow milk based so if your dd is cow milk protein intolerant, she'll be even worse on formula. You need a prescription for anti-allergenic formula like Neocate or Nutramigen. These are quite expensive so GPs are reluctant to prescribe them but you can insist on a 2 week trial. If you can't get this formula on prescription, you can get it yourself in a pharmacy, they are not prescription items but are quite expensive, the Neocate is around £30 for a 400gm can, you may want to pay yourself to trial it and then if it works, the GP is unlikely to refuse to prescribe it to you.

Please don't feel pressured to give up breastfeeding if you don't want to. I am going through DD refusing to feed (bf) due to reflux but I'm still breastfeeding her when she sleeps as she eats then or give her expressed breast milk by a spoon as she won't take a bottle, it's really hard, often very upsetting and time-consuming but it's worth it for me as I think she benefits from my milk and I don't think that she'll be better or it'll be easier on formula although I have to admit that I go through stages where I feel I can't cope anymore! but then you do somehow....

All food labels will say if a product has dairy (including proteins like whey or casein or buttermilk, cheese, cream etc) or soya in them, you do have to read the Ingredients section, it's a bit tedious at first but you quickly get the hang of it. Have a look at this website about breastfeeding and eliminating foods from your diet - www.kellymom.com/babyconcerns/food-sensitivity.html

Your baby doesn't need to be loosing weight to be referred to a pediatrician, insist that GP gives you a referral because your dd is in so much pain/discomfort. Let us know how you get on!

Hi Birchykel,

Your DD sounds exactly like mine. The first GP I saw said, I think it's time you gave up breastfeeding now..err no. The second one where I went to ask what else could be done after saying the gaviscon wasn't working and I wondered if it could be a dairy allergy told me babies don't react to breast milk and asked if I'd like some more gaviscon..

The thing is that I am quite a determined (aka pushy) person when I want to be so I just did my own research and just kept going back and going back with a screamy baby. In the end I told them I wanted a referral and just railroaded them into it. I have an acquaintance who is a paediatrician and she has much experience of GPs not believing that reflux exits so breast milk intolerances is a step further into the unknown.

But on the plus side, eliminating things from your diet is something you can do and it's not half as bad as you think.

The first thing I did was check the dietary requirements section of every food I buy. I shop online which made this really easy as they have it in a box. You need to avoid dairy, lactose and soy. Things to watch out for are bread, ham, biscuits etc which lots have either dairy or soy in. Easy substitutes are pure spread, rice milk or oatly milk, the free from section of the supermarket (although they tend to be for excluding gluten). A lot of milk substitute products contain soy though.

If you post what you typically eat, I am sure we can come up with some substitute ideas. It's really not that bad and if you would be happy to formula feed after, it's only for a few weeks so you can go armed with proof to the GP. Btw the consultant did say it takes 3 weeks though to me, not 2.

Hope that helps - just keep coming here for support. My new diet is fairly restrictive but much healthier (apart from the full English for breakfast today..) so I am also hoping to lose some baby weight! If you start now, we can do it together.

Morning all, do you mone if I pop in?

My 19wk old ebf DS was preacribed gaviscon yesterday. He took the first dose well from a bottle. But it's been a battle the last 2 times. We've ended up squirting it in to his mouth with a 2.5 ml remind syringe, or tipping in with a cup, but it's ending up with screaming. Not the best bedtime routine.

So, any ideas on how to get it into him without this trauma?

Hey bubandbump, thank you for the offer of doing this together, I would really like that. I need all the help I can get. I have looked at the 'free from' foods but think I am going to online shopping as it does look easier. Do you do tesco online? I guess I could just type in free from dairy foods etc and it will come up?

I am going back to the gp monday and I am going to have to be pushy and tell them straight. I cant believe they think 2 days is enough to see any difference.
I dont want to go on formula at all altho I do give her top up at bedtime after she has had both breasts. But I guess Ill have to cut that out too?
I wonder if you could tell me your typical days 'menu'?

I normally eat oats and honey special k with milk (which I love), lunch maybe cheese and crackers with pickle....sometimes miss lunch tho. for dinner, varies really, potatoes, pasta, chicken casserole (homemade and does contain cheese in my sauce), homemade lasagne, shephards pie....alsorts really. I do love chocolate but need to cut that out anyway to lose baby weight. I will pm you bubandbump

Milamum thanks for the links they have really helped too.

Hey buck, not sure what to suggest as it seems uve tried a lot ready. My girl was on gaviscon for a week and didn't get on with it, only took it wiv my expressed milk or formula, refused it wiv water. Plus it made her constipated too.
Would it help to give him a little feed first then give him the gaviscon before continuing the feed? Just an idea.
Hope u work it out.

Hi everyone, sorry to hear reflux troubles are still ongoing for some. We've had a strange week with DD ....some really good days where she seems totally reflux free and then some really bad ones with the arched back and unable to sleep.....

Birchy please do not listen to your GP and give up bf'ng unless you really have to....I got the same persistent advice and was switched to SMA, then Nutramigen. Given the state of me 1 month on after an EMCS and a baby who cried non stop for the first month...I dont think I had the willpower to logically think out the consequences! Nutramigen worked ok for DD but her allergy symptoms are definently still there and its now an endless case of trying more hydrolysed formulas now. I really do wish I had never given up Bf'ng....

hellitops and anyone else - what does the CMPI rash look like? DD has developed a hive like rash on her cheeks, stretching up to ears and neck. Its raised (little red and white bumps). Not sure if its because she has been frantically rubbing her face even more lately after feeds or if is just dribble rash? (we're now onto teething troubles as well....)

Will be buying neocate on monday and trialling it with DD as her allergy symptoms have definently not cleared up. Dirty nappies are now pretty much leaking at every change! has anyone else on nutramigen noticed a worsening of symptoms after an initial (early) improvement?

Yoga we've just started using Carobel with nutramigen...one scoop in 6 ounces at the moment and it seems to be helping with the choking/gulping. DD is a silent refluxer so sometimes a bit hard to tell as the vomit doesnt actually come out!

Hi nemo sorry to make quick but wanted to quickly say yes we noticed a worsening after being on nutramigen for 2 weeks. All seemed good after 2 weeks then the next week we went back to very runny leaky poos and not such great feeding. Have now been on neocate for 2 weeks and it's literally only today they've started being firmer and more regular (be prepared for forest green poos on neocate). Consultant said it will take at least 3 weeks to see proper improvement on neocate. Be warned it is v expensive - £37 for 400g so be prepared to battle with gp to prescribe! My DD actually took to the taste better than nutramigen. Consultant said it is less bitter and also has anti inflammatory properties which nutramigen doesn't have so it's def the best!

thanks Daisy....I might have stayed on nutramigen but DD's poos are getting really really bad...I'm having to bathe her after every dirty nappy and she has at least 4 a day. .

GP/consultant have already told me to stick with nutramigen but I'm going to try neocate and see how it goes. DD's been on nutramigen for 3 months though and symptoms are only starting to worsen now? (leaky nappies and rashes.....) The only thing thats changed in her feeding routine around the same time is the increased dosage of omeprazole - from 3mg to 10mg per day. I'm wondering if she is perhaps reacting to this?

On the plus side...she's seems more comfortable after feeding with the larger dose of omep!

nemo I haven't moved beyond trying pepti milk yet so I can't say for definite but I would think it she's been on it for 3 months and it's only just started getting worse, that maybe it might be better to look into other reasons before changing it again.

Could the leaky nappies and rashes be due to teething?

The rash I see, which is only now and again, I've only seen since we switched to apatamil and is more often seen when he gets worked up. It looks like little red splotches on the left side of his forehead and they're flat. I wonder if ours is more of a teething rash than a CMPI rash.

Right, carefully cutting out everything from my diet and both me and DD are really bad tonight so go back over everything double checking it. Completely bamboozled till I remember the vitamins I started taking last night to make sure I get enough calcium. They put soy in them!!! WTF (excuse language but got stomach ache and hourly waking up baby).

Arrrrggghhh.....