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.

Is it reflux?

Hello,

My son is almost 9 wks and exclusively breastfed. He is sick/burps up curdled milk/watery stuff after around 70% feeds, sometimes half an hr after feed. Burping helps and no problems with night feeds or weight gain. But we have to hold him upright for 30mins after feed in the day and even this doesnt always work. All getting a bit messy and dispiriting.

Can anyone tell me if this sounds like 'reflux'? Or tips for dealing with the following?

rapid let-down.
clucking noise when on the boob possible poor-latch (?)- could this lead to pukage?

Would really appreciate any tips and also wondered if the magic three months has been a turning point for people with similar experience?

Thank you!

Sorry not posted for a while everyone, been running around like a loon.

Re splotches, hellitops both my babies go/ went splotchy during and after crying jags - if it fades as your babe calms down I would suspect it's just that.

moominmamafinland what you're describing sounds like a classic case of oversupply and overactive letdown, rather than reflux, but I could be wrong. If he's not in any discomfort, no particular need to do aything at all. And if it is oversupply it is indeed all likely (but not guaranteed) to settle down in a month or so because your suppply of milk will be increasingly driven by supply/ demand as opposed to the post-birth hormones.

There is some information on oversupply and overactive letdown here that is very good.

To the poster who's been told by the GP to suspect her breastmilk as the cause of the problems, excuse me while I just (virtually) bang my head against the desk. No no no no NO!..... it might be something you're eating but it isn't your breastmilk per se. The most likely culprit is dairy (and you'll need to exclude everything with dairy traces in it - and that includes anything with whey or whey powder in it, anything with milk-based caesin, as well as the obvious things like milk, cream, cheese and butter. Also like another poster has said, soy may cause similar issues. Some children who have an allergy to milk proteins are also allergic to beef.

If none of that makes a difference, and you don't have an oversupply of milk (which could be contributing) then do press for a referral. Bloody, bloody GPs. They seem to know, on the whole, nothing about infant nutrition.

Well we had a drama last night. DD vomitted just as she was falling asleep. Nothing new about that, but she got the vomit in her eyes and also couldn't clear her nose and throat easily. She wasn't in danger (I'm glad I was co-sleeping though) but was very distressed. What 2 month old likes having their face washed at the best of times, and certainly not just as they are falling asleep.

So I think we are going to have to go on the medication route. My question is, has anyone done TED and it not had an effect? Should I just give up and start eating anything, or should I carry on even if she is on medication? Will my eating still make a difference if she is on medication? I thought that total elimination would solve all DD's problems but it really doesn't seem to be the case. Or do I carry on TED but stick to the really basic stuff only and not bring stuff back yet? Does the ingredients in tablets really make a difference? I can't not take my tablets so there isn't much point me checking the ingredients. Sorry, feeling very down about it today. Cutting out food was meant to be the holy grail - of course I don't know how bad she'd be if I was eating normally.

helli - possibly could be as a result of teething.... over the last two days her poo's have been fine.... toothpaste textured (sorry TMI I l know!) and she's only had two dirty nappies. We've been adding carobel to her feeds for the last 3 days so I dont know if thats perhaps whats helped to keep the nutramigen just running right through her...

DD's rash is raised, bumpy with whitish and red spots.. a bit like hives or urticaria? I've had a similar rash with hayfever. Anyway took her to the GP as it had spread from her cheeks right down to her neck and chest and up past her ears. She said it looked just like an extreme case of dry skin (?) and gave me a white paraffin ointment to put on it. Its helped her skin a lot - rash is still there but much more less angry and raised than before. I'm not convinced its 'just dry skin' but seeing a dietician in a fortnight so will keep using ointment and see how it is then. In the meantime - I'll stick with the nutramigen too - her reflux seems stable enough at the moment (famous last words!) and I'm a bit hesitant to change her milk.

camdancer so sorry to hear your LO is having a rough time. Cant help on the TED question but on the subject of meds.... DD had a terrible first 2 months of life with reflux and I tried all the 'natural' methods of trying to control it. nothing really helped until we switched her to hypo milk and even then it took omeprazole for her to finally stop screaming after and even between each feed. She's four months now and I'm finally beginning to experience the joys of a first child and she seems so much more comfortable now. I would go with your gut instinct... the paed tried to put her on 20mg of omep but I refused... and she's doing fine on 10mg for now. Hope things get better for you,

Hi camdancer, I did TED with no effect on dd's reflux. She is intolerant of dairy and wheat but my cutting out these food groups from my diet do not improve her reflux however, it does help her other symptoms like facial rash, itchy eyes and blood streaks in stools. She is on medication (Lansoprazole and Domperidone). I think she's got reflux due to immaturity of the esophagus/LES and food intolerances as a separate issue although I'm sure they aggravate the reflux and it may well be if she wasn't on medication, me cutting out dairy and wheat would have relieved the symptoms a little but not much as we actually had to increase her meds while I was on the TED! I'm still not eating dairy and wheat. When you stop TED, you need to re-introduce different food groups one at a time with 4 days between each to watch for any reaction.

Hey thanks narmarda, well I havent given up bf at all and dont intend to. I have cut out dairy for now, havent cut anything else out as yet but trying not to have soya either. The gp finally listened and gave us SMA lactose free formula as my girl has a top up before bed and after having both my breasts. So I will see how it goes for the next few weeks.

Nemo real pleased for you, glad your lo is more settled. sounds like your lo was like how mine is now. Hopefully she will be better soon. So tough isnt it.
Bubandmum hope things are ok and you had a better couple of nights.
Goodluck all.

I've made a plan. I'm going to do very strict TED until next week. I had been doing TED but with a few switches (chicken not turkey and lamb, apples and bananas not pears, a few extra veg). So I'm going to do it properly for 5 days. If I see improvements then I'll keep on, otherwise I'll give up and go to the doctor. Today was a dreadful day and I don't want to leave it much longer but my nice doctor isn't in until Monday.

birchykel glad your gp is finally listening to you and hope the changes work well.

Sorry so many having a hard time on here :(

birchykel oh god, you're going to hate me for this but.... your GP should have given you a hydrolysed formula (like aptamil pepti/ nutramigen) and not lactose-free as it's the cow's milk protein that typically causes the problem not the lactose. If you can hear a virtual noise, it's me banging my head against the desk again at the GP.

Sorry if I've just rained on your parade but I thought I had to say something if you're going to all the trouble of avoiding dairy in your diet so your baby doesn't get dairy proteins through breastmilk - it would be an awful shame if all your hard work was undone by giving SMA LF as the top-up: SMA LF contains unmodified cow's milk protein and isn't suitable for babies with suspected cow's milk protein allergy :(

I second narmada and hope everything starts getting better for everyone.

My ds seems to have taken to weaning very well. He's having fruity porridge for breakfast and I've just tried him with some baby rice and sweet potato and carrot purée which he liked. His stomach seems to have handled it alright, today he's been laughing and chatting after his feed, playing happily on his feed. He's already on what I think is a decent size portion but I'm making sure he still gets all his milk.

The apatamil pepti seems to have had an affect on his painful wind but I can still feel the milk hitting his stomach (not sure if that's normal or similar to the 'gurgle') and although his eyes are still red and itchy, they're not as bad. However, his feeds have started to go down again, which confuses me a little. I wondered about teething but today he has only had 4oz from the bottle from his two feeds where a few days ago he was managing 4oz every feed. He was also crying and kind of refusing feeds again, but I don't think it's his birthmark, as we woke this morning and the ulceration is gone and not sore anymore... so I'm wondering whether we need to change his milk.

I'm going to see what happens and if needs be ask the dietician on Monday when I ring about trying a different one.

Narmada, I was going to put on here today about the sma LF as it wasn't till I read the back of it that I realised lactose is the natural sugar in cow milk so not actually the dairy. I'm beginning to understand more with what lactose, soya, dairy etc really is. I'm so confused once again and as before dont know what I should be doing. I feel like just starting again. I think I may just bf and leave any formula....be tough as I don't seem to express well and my girl likes a top up at night so I won't beable to leave her wiv hubby much. I don't know an alternative. I wish I had a gp that actually listened.
Struggling already tonight, her reflux is really playing up, keeps waking her, can hear it all coming up. Not been this bad for a while.
If I get her referred what happens? What will the hosp do or/and ask?
Maybe I should go back to gp and tell her this sma lf is not dairy free and ask for a different one?
Well hope everyone has a good night and improve for us all. X

Hi Birchkel, I've just pm'd you. Definately go back and ask for peptic, or nutramigen. Don't let them fob you off with anything else and if they won't prescribe it, ask them why not?

Grrr some GPs. One of the girl's at a baby group I go to is a paediatrician and she said that some GPs don't even think that baby reflux exists so food intolerances is a step further into the dark for them. It's so frustrating being treated as a neurotic first time mum!

Hey all, its stupid o clock in the morning and need to post as I try to settle Lo. In tears moments ago, a real struggle tonight. We bought a new crib as she is getting too big for the Moses now plus it was rubbish ( another story) so a change there for her and I tried to leave it flat instead of propping her up and also didn't give her a top up of formula before bed but she seemed ok and fell asleep.2.5 hrs later awake, had a feed back to sleep only to be awakened by her gagging and throwing up 50 Mins later.
Don't know what to do, im shattered and in desperate need of a good sleep (know I'm not alone there) and my Lo can't settle. Usually once in a deep sleep she settles till her next feed.
Going to gp Monday and asking to be referred, sick of gp not knowing what she is doing and giving me milk that isn't right and bad advice.
Ok rant over.... sorry

Is anyone else struggling to cope with this?

birchykel sorry to hear you are struggling. Please know that with the right treatment there is light at the end of the tunnel even tho it doesn't feel like it now. Ime the biggest challenge was getting the gp to listen- they are shockingly shit. Once I'd seen a specialist and got DD on right formula and drugs things improved so much incl DDs sleep. It is so much harder to cope with everything when you are sleep deprived.

I'm sorry but I don't know what your LOs symptoms are but it sounds like from what I have read it may be CMPI. You def need a hydrolised formula like narmada said. My LO is on neocate which is totally artificial. It is suiting her great. However GPs are reluctant to prescribe as it's so expensive. You might be ok with nutramigen which my DD was on before. It is still made with cows milk but extensively hydrolised so most babies don't react to the protein as it is extensively broken down. Nutramigen is £14 a tin compared to £37 for neocate but obviously it is free if on prescription.

Is your LO on any medication? My DD is on omperazole (for acid) and domperidone (for sickness). My consultant thinks we can come off these now we have changed formula as he thinks my DD reflux is caused by the CMPI. Some babies have reflux in addition to the cmpi so you may find you need some kind of mediation too. Ranitidine is an acid neutraliser which often helps tho my DD needed a stronger acid blocker (omeprazole) - gps will sometimes prescribe ranitidne but want paed referral for omep.

Sorry if that's a bit of a brain dump. Please message back if any questions. Really push for a referral. Just a thought- not sure how it would work financially but it can drastically speed things up if you can pay for a private consultation with a paed. I was lucky in that I saw mine privately and got an appointment within days. I think the nhs wait list is up to 6 weeks for non urgent cases. When I saw my paed privately he said he would see us for any follow up on nhs (not all will do this) but as it goes we haven't needed any follow up.

Good luck with gp. Be forceful. Your baby should not have to suffer. Don't accept 'they will grow out of it.' take comfort that things will improve with the right help.

Hey Daisylulu, thanks for the advice. We are going tomorrow morning to see the gp and tell her we want a referral and we want milk that doesnt contain cows milk. I am so sick of being told to wait and see.
Her symtoms are worse except she seems to deal with the pain better, which probably sounds odd. Right now she has fallen asleep but she has alot of frothy saliva over her lips which worries me. She settles for alittle then coughs, throws up and gags. I can hear her tummy making horrible sounds be this happens at times. I am not sure if this is bad enough for a referral but the poor girl is getting no sleep (nor am i) and she is in pain so like you said Daisy she should not have to suffer. I just want to speak to someone who knows what they are talking about. She is on Ranitidine and domperidone which I thought was working but seems to be doing nothing now. She has 0.3mls three times a day.

Poor thing has just woken up after a 5 min nap, screaming. So best go
Sorry i am ranting about myself, feel bad

birchykel just a very quick one to say that ranitidine seems very low. My DD was on 1ml three times a day when she weighed about 5.6 kilo. I found I had to keep upping it and it would wear off after a few days. Try and get the gp to up the dose- it is weight related and there is a formula to calculate how many ml they should have.

Birchykel :( :( :(

Hope the doctor does something useful for a change. That ranitidine dose will be doing nothing, it's really low. Ask for the maximum dosage for her weight and like others have said a hydrolysed formula like Aptamil Pepti or Nutramigen - IMHO the first of these is more palatable.

sorry to hear of your troubles birchykel I hope you get the gp to listen and sort something out.

we have been switched to Nutramigen AA milk by the dietician as he started having bad feeds again -either only managing an oz before refusing the bottle or refusing it altogether. They became very painful again as well. He also started up again with some reflux-like symptoms. We started the nutramigen last night and he took it fine. Even managed 6oz at bed time and 5oz this morning (+1oz in baby rice and apple purée) without any trouble. Too early to tell if this is the milk or something else.

In other news, his birthmark is definitely shrinking -it is noticeably smaller now though still has a long way to go. And yesterday and quite a few times this morning he finally managed to roll from back to front with no trouble :)

hellitops glad to hear your LO is taking to AA ok. That's great news you've been swapped over and that the birthmark is shrinking. My DD is on neocate which is the same and she seems (touch wood touch wood touch wood) to be doing well on it 4 weeks on. Even though she only has between 5-6 ounces she is putting on lots of weight and has now overtaken the 75th centile

birchykel how did it go with the gp? Really hope you got some more sensible advice....

Just popping in with some positive stuff. My twins are almost 8 months old and both were born with severe reflux. T1's is silent, T2's classic. The first few weeks and months were hell. Utter utter misery. They both screamed incessantly, and then T2 would bring up gallons of feed, T1 would arch his back to the point that his head bruised my arm with him arching constantly. My dick of a GP (whom I no longer see) prescribed ABs 4 times back to back for T1, for a cough when actually he was trying to clear his tiny throat of acid. It was only when I arrived in tears at the HV clinic, having not slept for days that they started to take me seriously.
One of the senior partners saw them both and diagnosed reflux and then we got a referral to a private derm to treat it.
We were prescribed a raft of drugs and 2 different prescription formulas - my attempts to breastfeed ended at 7 weeks as they seemed so miserable on my milk. The new formula and drugs was miraculous. Within a couple of days they were 75% better. T1's arching stopped, overnight.
We've had to go back regularly to have their doses adjusted and T1 also has a respiratory thing going on and us on an inhaler, but they are chubby, giggly, contented little boys who play, poo and sleep! They got better.

They got better.

If you're going down the same path we were on, please push with all your might to see a paediatrician and treat aggressively. It's so so worth it.

Daisy- gp went okish, finally got referred so happy that we get to speak to someone who will hopefully know what their talking about....as for the formula again was reluctant and she said she would rather leave it to the pediatrician to say if my Lo has a milk allergy. So my partner did have words but still waiting to hear about the milk but gp did make me feel like I was making it all up! Pleased to see ur Lo is doing well on the formula. Is she on that milk cos lf not being able to have cow's milk? Oh yes and won't up dosage as gp wants the hosp to do it all now. Too scared to just up it myself.

Heli that's great news about ur Lo, birthmark going down and a more settled little man is Brill.
Bagofgolly thanks for the lovely post, it is nice to hear that u came out the other end and things do get better, gives us all hope.

My Lo had her first jabs today, think I was worse than her lol. She is still very unsettled and reflux is bad again tonight but fingers crossed we hear soon. How long just it take to hear roughly anyone?

Hope ur all sleep well and all babies are pain free.
X

So sorry bagofholly...very tired and didn't realise I spelt it wrong.
X

Birchykel- pleased to hear that you have a referral but sorry that gp wouldn't change milk or up medicine. I'm not sure how long it takes to get a referral on nhs. Hopefully someone else can help with that? I think I've heard some ladies say it can take a while but a good trick is to call the hospital and push for a cancellation- if your baby is in pain you should not have to wait.

Yes my LO has cows milk protein allergy and that is what her neocate formula is for. We are slowly stopping her medication now as paed thought it was the allergy causing the reflux.

My LO is always really unsettled after her jabs for a few days so fingers crossed your one is ok.

bagofholly thanks so much for the update. Having one baby with reflux is so stressful so I cannot even begin to imagine how you coped with two!!!! So glad to hear your DTs are doing well

Hi Ladies,

I've just posted on someone else thread and feel slightly guilty I may have hijacked it a bit so apologies if you've read this before but I could really do with some advice!

Also advance aplolgies as I tend to ramble but want to try and get everything in!!

DD is 13 weeks. I had planned to BF but when we left hospital she wouldn't latch on. We ended up going back in for a week as she didn't feed for 24 hours, lost lots of weight and then had to be cup fed back up to her birth weight. Once we got out I expressed and bottle fed for 4 weeks but found this way too much once DP went back to work so gradually went from topping up with formula to fully formula feeding.
As a side note we've since had DD looked over by DP's chiropractor who said DD's jaw is slightly out of line and in all likelihood she would never have latched on without being forced and causing her pain. She also noted her diaphraqgm is "slightly tight" but didn't seem to be anything to worry about.

Once fully on formula DD seemed quite colicy so we switched from C&G number 1 to C&G comfort, overnight she was back to her normally happy self and a million times better on the colic front.

She's always struggled bringing up wind which we use Infacol for and as times gone on has got more and more refluxy. I'd mentioned it to the HV at clinic initially but as she was putting weight on and it didn't seem to bother her (just meant lots of muslins to hand at all times and plenty of changes of clothes!) we agreed not to bother with the GP.

Two weeks ago she got much worse and we ended up at the out of hours emergency GP over the weekend where I asked for a prescription for Gaviscon as she wouldn't feed, was just arching her back and writhing about, wouldn't sleep unless held upright and was just screaming in pain.

The Gaviscons worked a dream for the reflux but we're still on Comfort milk and it is INCREDIBLY thick. We've managed to get it down her by using variflow teats and initially using just 1 sachet of Gaviscon per 6oz feed. We've since been told by GP that as DD is over 10lb we need to use 2 sachets and to disregard the info on the back of the pack saying it needs to be mixed with at least 8oz of liquid.

Now while the reflux is a million times better DD seems to be struggling at the other end. We get a lot of noisy wind and for the last week or so since upping her dosage to 2 sachets we've had 1 almost solid poo each day (+ 1 "normal") and unsurprisingly she seems very uncomfortable with it.

I was wondering whether to switch back to number 1 milk as it's not so thick? I tried the C&G helpline earlier and got absolutely nowhere and was more confused than ever when I got off the phone. We had our 3 month check with the HV yesterday, our normal one is "off indefinitely" and her replacement didn't have anything overly constructive to say either.

I've tried giving one bottle of number 1 today plus the rest Comfort, will up to 2 bottles of number 1 tomorrow and keep increasing as per the C&G Careline lady's advice but just wondered if anyone might be able to give me some more constructive advice? I'm reluctant to go down the Ranitidine/Omeperazole route as the Gaviscon seems to keep her reflux under control but at the same time don't want to see her struggling like she has done the last couple of days.

Sorry for the absolute ramble and if you're still reading, thank you!!

V quick post, sorry. You can put the gaviscon in a glass, add 2ml water, mix to a paste, and then add another 3ml and syringe it in before each feed. It doesn't have to go in the feed itself.
Gaviscon can constipate, we got some movicol sachets and they got things moving gently. Good luck.

Sorry, to clarify, the gaviscon will thicken the feed as well as dealing with reflux so it might be better to give them separately.