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.

Hi nemogirl sorry to hear you are having a rough time too. It sounds like you definitely need neocate. It's sorted out my DDs poos. No longer have nappy explosions! I can completely see why you don't want to put your LO on domperidone until you have theformula sorted. Good luck with trying to get it changed.

Interesting to hear your experience of teething. My DD constantly has her fist in her mouth and seems very uncomfortable. We have the third set of jabs next wed- I too am dreading them. And it's not helped by the fact that I have my first day and night away from J on the fri - it's my best friends wedding and I'm a bridesmaid. I'm dreading it tbh- really hope J has recovered from her jabs by the

birchy so sorry to hear you are having such a hard time I hope the gp does something today. He must increase your meds- that dosage of rantidine will be doing nothing. Let us know how you get on. Keeping everything crossed for you.

Daisylulu S is exactly the same...fist in mouth, severe drooling and constant grumpiness! Her gums have gotten pretty swollen and the tips are almost white now so I'm hoping the stupid tooth comes out soon! Although 5 months is a bit early for teeth I know...

Hope all is ok with J's jabs on wed, we have ours on thurs. Apparently its a mere 0.7% who react with severe crying to the DTap jabs...too much of a coincidence that reflux babies seem to suffer more after them?

And I know the feeling about being away from your LO...I worry all the time when I leave her with DH in case she has a really bad reflux episode and he cant calm her down...

hi nemorgirl our ds has been having teething pains on and off for a month or so now but no signs of actual teeth trying to cut through yet :( he's 21 weeks now, 5 months old next week. Apparently they can cut teeth from 4 months -my mum says I was really early.

Thankfully he seems to be managing his milk feeds without needing the tube (he pulled it out last night and I'm leaving it out for the moment). The dietician said he was fine to be on that amount with his three purée meals (usually half -3/4 a bowl) and is weight gain is good. He's now 16lb 6 so he's doubled his birth weight and is pretty much out of his 3-6month clothes :)

I've asked to be put back on the pepti milk as I don't think he needs to be on the nutramigen. There is powdered cow's milk in the baby porridge he eats every morning and he doesn't seem to react to it. It's only a small amount and the dietician says the production process will probably break down the protein chains a bit, so I'm sure he can manage the 3% in the pepti milk. He's also had a jar of cow and gate cheesy cauliflower and broccolli (didn't realise it had cheese in till I'd bought it) and he also had no problem with that.

I realised that at the time his feeds on the bottle dropped and he seemed to be in pain, he was struggling to have food from the spoon too -so I think looking back his mouth was sore (teething?) rather than a reaction to the milk. His feeds had already started improving before we changed the milk. We're going to try it anyway. Will keep you posted.

Hope all appointments and referrals go well and things start going better for everyone. Good luck!

Hi ladies- quick q if you don't mind...

DD is on omeprazole and domperidone. I currently give her omep at 10.30am. However I've noticed she's starting to not take her 7am bottle so well.

Should I give it to her at 630am instead? If so can I give her domperidone at the same time (or say 15 mins after the omep) as she needs the dom first thing?

We have a follow up with the lovely Keith Lindley at GOSH on Tuesday so will let you know what he says. I think it's become very clear that she has CMPI and reflux and I also think her meds need increasing (they haven't been for 2 months and she's put on a lot of weight). On the positives since being on a hypoallergenic milk she no longer has odd bowel movements or wind.

Hope everyone else ok.

Hey all, thought I'd update.
Got an appointment for October but I called the secretary and saw gp who actually pushed for us to be seen early and we have an appointment Fri morn!! So pleased with that but now worried ill get fobbed off again or forget to tell him something.

Stressing about my milk, my partner thinks bottle would be better cos she isn't as sick but I want to breastfeed but she seems worse so must be my diet. She seems fine on sma gold so can't be dairy. Can't work out what I'm eating that dont agree with her.

Hope everyone is doing ok and having settled nights.

X

birchy am so pleased for you! Thats fantastic... make sure you write everything you want to tell him down on a piece of paper and dont be embarrassed to tick it all off during your appt...I did much to my paed's annoyance! . But who cares... with a 3 month follow up its not as if you're going to get another chance soon....

S was terrible on my breastmilk for the first month and our GP thought it might have been a lactose intolerance? Perhaps get that checked out..

Daisy sorry cant help on the omeprazole q... we normally give S her dose after her 7am morning feed as she's just too impatient to wait the recommended 30mins before a feed. She's feeding through the night..like clockwork every 5 hours so we dont really have a 'window' of an empty stomach as such! Still refusing to give her domperidine yet.. her symptoms seem to be improving this week but she's also having an easier week with the teething!

Our dietician appt went well..she agreed to trial S on nutramigen AA (same as neocate I'm told but cheaper!) to rule out the dairy intolerance aspect. good news but S wont take it all! Point blank refused the bottle (despite us making her wait a good 6 hours before the feed) and actually made gag faces when I tried to make her take it...

So far its two scoops of AA formula to 5 of her regular nutramigen - any more and she figures out what we're trying to do! Its going to be a slow process! Going to start weaning dairy free regardless of milk situation this week so I shall be posting lots of Q's here for the experienced ones amongst us!

hellitops good to hear the LO is feeding well without the tube...hope everything stays ok on your side...

Not sure if my ds has reflux, think it's such a hard thing to definitely determine. Ds writhes in agony, goes purple, froths at the mouth sticks Tongue out, etc..... He has tried Infacol but that maxes him sick, then Colief (complete nightmare to give as have to express breast milk then add 4 drops then try to give him before a feed, almost impossible even using a syringe, plus it takes so long and in the middle of the night is just horrendous) Colief is actually for lactose intolerance and this can often be the cause of a lot of symptoms associated with reflux. I've tried Gaviscon, again just a nightmare to administer so have given up, yesterday I bought gripe water, and it works, really stopped the writhing in agony however I only managed to get it into him once, has spat it out since, it's very sticky and anyone using the Woodwards gripe water, bought from supermarket may have noticed the bottle is a nightmare to pour the wat out of, it just leaks and goes everywhere, stupid design of old type medicine bottle.
Consequently I have just done my 11 am feed and burped ds and not given him anything. Is fast asleep now, obviously it won't be like that come this evening when it's always difficult. I would recommend trying gripe water if you are not certain it's reflux and could just be a young gut not coping well with feeding.

quick q for CMPI mum's out there...

ds is up for having snacks now as well as three meals and three bottles (using all his energy rolling over and over again :) ) and I'm wondering what sort of thing I can give him.

I started with some fruit purée but I want to liven things up a little as I'm kind of doing that as a 'desert' after his tea as well. I'm wondering what other mums do -I know it's difficult at the moment as he's only 5 months old and I'm supposed to avoid gluten as well as diary -but if I could get some ideas that would be great. Are there soy alternatives to yogurt and has anyone tried them?

Any help gratefully appreciated

Afternoon! DS4 has been given gaviscon for reflux today but either I have no memory left (entirely possible) or the dosing instructions have changed?

He is 8wks and takes 5oz formula at a time. He weighs 11lb14. So the instructions say to give him 2 sachets in each 8oz bottle (first problem) but also to only give 6 sachets per 24hrs. Which is not all of his feeds.

Any ideas?

hi buttonmoon ignore the thing about 8oz bottles, however you will have to pick and chose his feeds I think :(

Thanks hellitops. I ended up putting one sachet in the first 6 feeds of the day (sometimes he has 7). It's really worked a treat - he was in the same outfit all day on Saturday !

However, he's also had awful constipation and distressing wind (rear end) all weekend culminating in a 3 hour screaming fit between 3 & 6 am today. But he was relieved after

Any ideas? I'm going to make another appointment today but I don't know what to ask for next - ranitidine? It's so long ago that dd was going through this that things might have changed!

button I can't give any help with reflux but is the painful wind only since the gaviscon? my ds had painful wind since he was a few weeks old, although not necessarily every day, and it used to cause him to scream and cry in pain for a while. He went on formula for cow's milk allergy and hasn't had any since.

if the constipation doesn't seem to get any better and is quite severe/causing a lot of pain, I would probably try to get a different prescription. I took ds off it when it was causing him a lot of pain as I couldn't stand to watch him struggle so much :(

Hi everyone. This is my first mumsnet post (although i have done a lot of reading!) and I hope someone can give me some advice. I started reading the thread but am in such a state right now I didn't get through it all, but I will continue after this.

My baby is 12 weeks, ebf, and ever since day one he has had problems with wind, which seemed to get better with age (He now finds it easier to bring up a burp). For the last 6 weeks he has been very distressed around bed time, following the last feed. My main question is, can babies suffer from reflux only in the evening?

He has the following symptoms - wet burps, hiccups, a funny hoarse sounding groan, wet sound at the back of his throat if I lie him down after a feed. Congested nose. Coughing, sometimes choking during a feed. He stops and starts while feeding (although not always and only sometimes does this upset him) After his 6/7pm feed he screams so hard it hurts me. He arches his back and screams and screams, nothing will console him. All I want to do is cuddle him to make him feel better but it doesn't work. We just hold him until he cries himself to sleep after a couple of hours. More often than not he calms down in our arms and we are then able to put him down in his basket awake and shush him to sleep.

He does not have these symptoms after the middle of the night feed, and only occasionally during the day. This is why I have not really considered reflux and until now had put it down to colic or overtiredness. I thought reflux was an all day everyday kind of problem. Once asleep at night he sleeps weel, only wakes once for a quick feed sometime between 2 and 6 (I know I'm lucky on that front)

I think that maybe in the evening he feeds for longer, maybe over feeds and this causes the problem? I think he carries on feeding for comfort, although he rarely does this any other time. He feeds every 3 hrs and only for 10 mins a go - I have fast let down/oversupply. Was dismissed by GP at around 6 weeks saying colic, although I wasn't convinced by her knowlege as she didn't know gripe water no longer contained alcohol! Have had some success with Gripe water and have tried infacol today.

This evening we hit a low - I have never seen him cry like he did tonight, and it was accompanied by large quantities of vomit. Undigested, lumpy milk, very sour smelling. Until recently he was never sick, and in the last 2 weeks he has posseted once or twice a day but only sometimes it bothers him. This evening he was really sick and it made him scream. He was visibly in pain.

I don't really want to go to the GP for various reasons, so was thinking of buying some gaviscon over the counter to try tommorrow night. He won't take a bottle - can I administer with a syringe? I am a bit wary of self prescribing but I am sure the GP will send me away empty handed.

One of the main problems is that by bed time, a bout of crying/pain keeps him awake which then leads to chronic overtiredness. We are totally and utterly exhausted and I just want him to be happy and comfortable.

One last thought - I had thought it might be totally unrelated and in fact a teething thing. He is doing a lot of fist sucking. I'm hoping the gaviscon will either fix the problem or rule out reflux?

Sorry for the epic post, I just wanted to give as much background as poss.

thank you

Out of utter despair I logged on today to find a thread about reflux/colic. I figured there must be one on mumsnet, and here it is.

My DH is walking the LO (5wo tomorrow) round the field in a sling for the third time this evening after she woke from a nice restful sleep and suddenly started screaming in pain half way through BF. It hurts me so much to see my feeding cause her such anguish. DD1 was soothed and comforted by BF not riven with spasm of pain.

I have been given infant gaviscon today by GP for the first time, she has had one dose (double sachet). Have a second batch made up but baby too distressed to swallow it. Now what?

Have ordered wedge and baby positioner to hold her on it from babyREFLUX so that maybe for the first time in 5 weeks I can sleep without having a small infant clasped to my chest propped up on pillows.

I confess to feeling violent thoughts towards LO. I'm sure other people feel like this sometimes. I think it wouldn't be so bad if she died, then we would all get our lives back. HV is coming on Friday, for other reasons (difficult pregnancy) she is concerned I am teetering on PND, 3 days of dreadful crying from LO and helplessly watching her pain is going to push me over. I'm just so exhausted.

Does gaviscon work? How long to wait? GP says come back in a week. ANy help anyone can offer please.

Oh god pempem and mama sounds like you are both having an absolutely horrendous time

We have all been there and nothing can prepare you for the heartbreak of watching your LO in pain whilst trying to feed. That combined with the sleepless nights and screaming really is awful. But rest assured with the right meds/diet there is light at the end of tunnel.

Sorry to make this quicker than I'd like but gaviscon is generally the first port of call in meds. I think it doesn't work for severe cases but it's worth a try. The next step is often ranitidine and then omeprazole. Check out the crying over spilt milk website (a NZ website) for more info on medications etc.

However one thing you can do right now..... Did you knowthat cows milk protein intolerance and reflux often go hand in hand? My LO had horrific reflux, projectile vomiting and feed refusal caused by her intolerance to cows milk. She is now on a hypoallergenic formula but if you are BF you can cut out all dairy from your diet to have the same effect. You need to do this for at least2 weeks. It's definitely worth trying as many of the mums on here havefound their LOs reflux symptoms and pain disappeared once they'd eliminated dairy.

Hopefully some of the other reflux veterans can offer their advice. Good luck and do come here to get support. It's an awful thing to experience but it will get better with the right help!

You poor things. You make my acidy little man sound like an angel.

Yes, gaviscon does work, almost straight away but it can be hellish trying to get it into a bf baby. You could try expressing some?

I've now taken ds off the gaviscon and he was greatly relieved (in more than one way ). We're back to the gp tomorrow morning to get (hopefully) ranitidine.

Mama I've never felt violent towards ds or dd when she was bad but I know it's not uncommon. Please make sure you have enough support and that you are gentle with yourself. Looking after such a very needy baby is totally draining and you need to make sure you put yourself at the top of the priority list too.

PemPem London and Mamalamoo,

You have come to the right place - we all understand unfortunately what it is like to watch your baby writhe in pain from something as natural as feeding when it should be one of their sources of comfort as they get used to the world.

For me, I needed a 'label' for what iscwrong with my DD so I could at least have some hope that there could be an end in sight.

I am really no expert but it turned out my DD has multiple food intolerances which she is getting through my breast milk. The main problem with diagnosing reflux is that some gp's don't believe that it exists and despite us getting a private appointment with a leading gastro paediatrician, didn't believe his diagnosis that a baby can be intolerant to proteins in the breast milk.

Her symptoms are silent reflux mainly at night characterized by a clicking sound and a swallow, frequent night wakings, arching back, banging head etc. Apparently it seems that babies with reflux caused by intolerances are more likely to be worse at night when the bowel is more active. Another clue is runny nappies and explosive / strained poos. We are lucky that DD doesn't really cry with the reflux, she just wakes up constantly and wants to feed to wash the acid down.

Gaviscon did help us and we administered it with ebm in a bottle before every feed however she is now on a more hefty dose of ranitidine which works ok (along with my exclusion diet).

I would say trust your instincts and do as much research as you can into your lo's symptoms. GP's will rely on your observations to diagnose reflux so a diary would be helpful and if you ebf, it might be worth cutting out dairy and soya (the two often go hand in hand) for 2 weeks to see if it makes a difference. It really does need to be everything though as even the slightest trace can set her off and there is no improvement for 9 days.

I would also say be a regular visitor to your gp - I turned up to baby clinic every week without dial to tell them it wasn't working. Hopefully you won't have to do that but I was ready to fight to get a paediatrician referral asap. In the end we went private to speed it up and bulldozed the gp into the referral so we could get it through her health insurance although not everyone will be lucky enough to have that. Btw gripe water is an antacid so if it helps, it might be pointing towards reflux.

It is heartbreaking as I watch my DD now writhing in pain (some dairy slippage a week ago) but keep coming back here for support and hopefully some more information on pure reflux with someone of more experience than myself.

Thank you all for quick replies. My baby does the click/swallow too and definitely bangs his head.

As for food intolerance, the only dairy in my diet is two cups of read a day with skimmed milk. I'll try to cut those out! What might soya be in that I don't know about?

With gaviscon, if it's only the evenings that give us grief should I o ly administer before the night feeds or does it have am accumulative effect? And if I do two evening feeds close together (6 and 7pm with bath in between) should I give Gaviscon before both of these? And one more Q- if I can get him to rake a bottle, do I need a special teat for the med - I have mam medium flow.

Thank you again so much.

Ps what is 'pure' reflux? And if it's food intolerance, is it a temporary thing or lifelong?

I've found that gaviscon works immediately so you could just use it when it matters. It went through our tommee tippee slow flow fine but I've heard that a medium flow might be better. Give gaviscon with both feeds.

Re the food intolerance - it could be either: short lived or life long. Only time will tell. I believe that it is often only temporary but it might not be.

Soya is a 'known allergen' so 'should' be listed on packets. You might be surprised though - it can be in things like crisps etc.

hi, could anyone please help me on my thread here

pempem I was the same at first with my ds as his trouble wasn't necessarily every feed or all day or anything but it turned out his difficulty was a cow's milk allergy and he's back to being a 'normal' baby on the hypoallergic formula. Thankfully his allergy is not so severe and he can handle the small amount of milk foods in cow and gate baby porridge and jars.

I would definitely think about trying the diary exclusion diet as many mums on here have found their children to have CMPI as well as reflux, but their children weren't diagnosed until around a year old. They say most children grow out of milk intolerance by 2 years old.

You will have to push with the gps though, as bump said, many people here have had trouble as gp's (and hv's) seem not to know or believe in reflux and CMPI.

Keep us all posted and good luck!

mama I know what you mean about the violent feelings, you are not the only one. If you want someone to talk to who has been through it, feel free to PM. It does get better.

I was sure I'd posted on this thread yesterday afternoon - but I'm obviously losing my marbles!

Paeds have said that they won't give ds ranitidine as he's not losing weight. So it's ok to leave him in pain then?! And that (based on a second hand telephone examination) it's not reflux at all. I'm overfeeding him. Even sticking to 30oz a day (which is the recommended amount on the box for a baby his age but a lb lighter) is too much. Apparently he should only be having 24oz They tell you to give them more so they sell more And there was me thinking that they were heavily regulated!

So this morning I've done some more research and discovered that for his weight the NHS recommend he consumes between 27.5 and 38.5oz. Not 24oz. What a surprise!

They also said to retry the gaviscon (even though he's a glutton not got reflux ) so I did last night. Two feeds with it meant 3 hours of screaming before he managed to poo some playdough again.

I'm so damn angry. I have insisted on a referral anyway so I can go to the clinic and punch this paed calmly explain my point to them. Must go now. My glutton seems to be shouting as if he's in pain. I wonder why that would be?!

Thanks for the advice everyone. Sounds like you're having a nightmare buttonmoon. I hope you manage to get the prescription eventually.

Am now worried my little boy will be constipated! He is ebf and usually poos every day. Is constipation a common side effect? It says nothing about that on the packet.

I should probably post this in the breastfeeding forum but I was wondering, I've been mixing the gaviscon (got it prescribed in the end very easily) with 5ml of boiled water and then 10-20 ml of expressed milk. If I'm doing this every feed, is my supply going to be affected? will my body think he needs less milk if he's getting some of it from a bottle? Maybe I should express 20ml after each feed?

Thanks

Just typed a message and lost it.

Today is shit. Trying smaller feeds but he just wants to feed every 2 hours then. He keeps falling asleep and waking after 10 mins screeching and puking all over him and me. He's so miserable that even his dummy isn't having the same effect as yesterday.

Have tried to halve the dose and put 1/2 a sachet in each feed so I don't know if that will help.

I'm going to go the the baby clinic later and see if the HVs have any more suggestions. Just off to put the heating on to see if I can't dry him some clean sleepsuits before he totally runs out.

Oh, and has anyone tried SMA staydown? How does that work in terms of constipation?