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 yoga we had our first proper bit of constipation today -one small pellet sized stool :( I'm not sure I would really know how to recognise other signs of constipation unless it was really bad.

Changing back to the normal milk has caused the explosive often wet sounding farts to start again and he's not even been on it 24hours. Today has been around the same crying and refusing to settle-wise but with less sleep than yesterday. He's in his cot now and had 25oz today so I don't know what's going on.

Do you know any good sites about CMPI?

Hope things are going well at your end

Hi yogamummy, totally agree I wouldn't put up with it either I hate that the hv thinks I'm being an over worried parent and ignoring my concerns. My girl screamed last night from 7pm till 12am in-between being sick, windy, gagging, tongue out a lot, laying on me for comfort and then hiccupping before crying again, she finally fell asleep at 12 due to exhaustion. Then today the same, can't be put down, sick all the time and even refused to feed this afternoon.
I'll keep a diary good idea, I just hope I don't get fobbed off by gp too. I just know something isn't right.

Love that there is support on here
X

Helli afraid I'm not much use for CMPI sites, anything linked to the crying over split milk site?

Sounds like the poor chap needs the comfort milk, I'd get some vari-flow teats and ask the GP for some ranitidine instead of IG and go back on comfort. You will know if acid is causing the problem within a few days on ranitidine.

As for us my DD is back on regular milk, the pepti didn't make much difference to her reflux issues, although her skin did look nicer! However I have asked the GP for Enfamil A.R. a pre-thickened formula, I think one of Holly's DT's is on this. I think a lot of the problem is bringing the milk back up, so hopefully this will help it sit in her tummy better and not constipate like the carabel seemed to.

Although I have more prune juice in the house & I'm not afraid to use it!! :)

X post Birchy, sorry about that!
Sounds very much like reflux to me - but if you read back, lots of things can make it seem like reflux. Are you bottle or breast feeding?
Narmada posted a few suggestions of other things to rule out a few posts ago (on iPad typing with one hand or I'd look back & link it for you!)
Regardless, that is not normal for a little baby, so you need to be firm with the GP and insist on some help. If all else fails have a meltdown in the GP's office!! Good luck ;)

yoga sounds good. I have to say I'm glad I don't have the sick issues along with everything else I'm not sure how I'd cope. The crying and screaming is enough for me.

and hugs for everyone dealing with visual reflux

we're thinking of ringing the doc tomorrow, as you said the IG doesn't seem to be working and the comfort milk was helping some. We're also ringing as we're worried his birthmark is becoming ulcerated as if he didn't have enough going on, poor little guy :(

birch I've had similar problems with HVs, since his weight gain is pretty good they just say persevere or blame it all on the birthmark on his lip :( I've been keeping record using an app on my phone called Baby ESP -I would recommend if you have android phone or iphone. Costs £3 for the full version but I think it's been worth it. I use it to record amount and length of feed, length of sleep, nappy changes, and try and use it for crying times and whatnot. You can add notes to each thing (such as slept in arms, crying feed etc) and record things like sick and medicines. There's also a journal section and it makes charts of things like feeding amounts and sleeping times so you can track it (my DS is all over the place looking at the last week).

I find it a lot easier than trying to keep a paper record. I usually have my phone with it and it only takes a second to activate it

Thanks helli, I now have the app and it is brill. Really helps to see what is going on.

Totally agree with comments on persevering with the GP. After two hospital stays my HV basically told me I just had to get on with it and she would grow out of it. She then went on leave last week and she rang me yesterday. Was not aware A had been in hospital again. Then I told her that weight gain had now dropped and was on bottom centile. This made her sit up and take notice ( surprise surprise ) - she now conveniently agrees with me that something needs doing.
Good luck to you all. We have the hospital tomorrow ( never looked forward to going to hospital so much in my life ) and will let you know how we get on.

Hi all, yes early morning post again. I am taking her to gp in morn, poor girl had screaming fit for 2hours last night I could here it all coming up but she would swallow it again and scream. She would doze off and 30secs later scream again. Finally got her off to sleep and she managed 3 hours so I'm pleased wiv that just feeding now and hoping she will go down ok. A question tho if she does go on baby gaviscon how long for and when does it stop?
Hope everyone has had a good night sleep and ur little ones are all ok.

Oh yea I forgot to ask does anyone know what the beat baby sling is? I really need one as can't put babys down. Keep researching and thought about three babasling? Any ideas gratefully received.

Hi Birchy I would ask GP to put you straight on to ranitidine (you are breast feeding?) The baby gaviscon is a right faff to give esp if you BF. My GP went straight to ranitidine as he understood the inns and outs of dealing with reflux and BFing. If you also need a method of thickening your milk I would then use Carobel, it is a carob based thickening paste. Much better combo in my humble opinion.
Good luck with your doc & don't take no for an answer on the meds front. A friend of mine had to go back a week after given the baby gaviscon and have a melt down to get ranitidine but GP finally realised it made more sense when you BF and prescribed and apologised. She now has a content little DS.
As for slings - I have them all!! I didn't like the babasling. My preference for a LO for around the house would def be a moby wrap or I hear the close carrier is meant to be similar and very good to.
If you don't like the look of the fabric wrap then a good old baby bjorn (they have a new one out meant to be mega comfortable) or a manduka or Ergo. The later two claim to be better for baby's spinal development in first 4 months. I have an Ergo and love it, friend has Manduka and loves it. I have been lent a baby bjorn & love it too! Sorry, very confusing!

Lol yogamummy....u was doing so well and then I was confused again. I will look at all u have suggested. as for gp went there and he said meds side affects may give her constipation and as she doesn't poo every day ( but wen she does its watery) he want me to try boiled water in-between feeds first. if it gets worse have to go back. not sure if I should have demanded meds but ill try water and see. do u know the side affects of ranitidine?
Thanks so much for support.x

Birchy no side effects that I am aware of, just a happier baby - is that a good one?
Hope the water works. If things are really bunged up I find 1oz of prune juice with 2oz of boiled water (same way as you make formula to kill any nasties) & give her about 1oz works absolute wonders. I think your LO needs to be 2 months for this remedy.

Thought I'd do a little update. Took him off the IG but the constipation isn't better (actually a bit worse with larger solid stools and a bit of bleeding this afternoon -cue panicked mum). Just had a big discussion with HV and we've decided to put him back on the IG as it was sorting his reflux out and give it a few days with a bit of cooled boiled water and massages -his digestive system is probably a bit confused by swapping from the comfort to normal.

The gaviscon was/is working though as no crying or screaming sessions, normal happy/sleep feeds and much better naps. Yesterday he self-settled a couple of times and today he's gone down in his cot for 2 naps -45mins and 1 1/2hr. Only crying due to constipation and we've even done more rolling from front to back Let's just hope the constipation sorts itself out soon. Might treat myself with some tonight.

Hope everyone else is doing alright/better too :)

Hello, could I join you? I wish I'd found this thread earlier - have just spent a while reading back.

I'm the mum of an 8 month old with reflux, who is now mostly controlled with Gaviscon and ranitidine. My niece has a 2 month old who is following the same pattern and she's a single mum so I really feel for her. The reflux has been a bit worse this week as he's had a tummy bug and a cold so there's been a few nights of sleeping for a few hours in the pushchair (he's too active for his wedge and the cot blocks aren't quite enough sometimes). I've got a bit of a comfort feeder (even though he used to refuse to feed) and we're finally down to 4 feeds a day - he can't get down to 3 yet as he can only drink 5-6oz at once.

Hi Birchy I was still using my Kari-me today - I couldn't live without it when he was 3-4 months old. I think any of the long stretchy things are good (like Moby wrap) and they're not as difficult to use as they look. I got into slings with a Baby Bjorn type one but I found him much easier to carry and better supported once I started using a Kari-me.

With the ranitidine and Gaviscon thing - I think my little one's a bit slow to grow out of his reflux. We're hoping to have another attempt at weaning off ranitidine once his feeds settle. We had a bit of trouble with constipation with Gaviscon at first, but he adjusted to it over a few weeks. I don't know of any side-effects for ranitidine. I believe it's only fairly recently been shown to be safe for babies and only used to be allowed to be given to babies who were failing to thrive. It's a long time since I looked this up though. My little man needed it despite being a chunky monkey.

Hope you all have a reasonable night and appointments go well :)

hi pennny so you would recommend continuing to use the gaviscon if it is working as the constipation could just be his system getting used to it, like the HV recommended I do?

Helli I think it depends how bad the constipation is because it took a while for my LO to get used to it but the Gaviscon worked really well for him. A few minutes after Gaviscon you could see he was much happier and now I hate feeding him without Gaviscon. His constipation got no worse than some grumbling just beforehand in the morning and a lot of effort to get out a very long formed stool (sorry for the detail). I can't remember how long it took to settle, but it was long enough to make me think my health visitor was talking nonsense again :) (Thankfully there is another much better health visitor covering our area.) I don't think I'd stick with it if the constipation was too bad and we still needed rantidine as well by 12 weeks.

Sorry, my partner just reminded me that we found the Gaviscon instructions confusing at first. Our LO was over 10lbs so he started on 2 sachets Gaviscon which must be mixed with 30mls water (or with the milk if bottle feeding). We gave it in only 15mls by mistake for a while, which we think made the constipation worse.

Hey all, just an update for you. I spoke to my bf counsellor who told me that I shldnt be giving my girl water and that my gp needs retraining in bf. I am shocked he would tell me to do this when actually it can be dangerous. Luckily my girl didnt like the water, and only took a little. She has been pooing better, and doesnt seem to be too bad at the moment with any pain. the counsellor thinks maybe she isnt feeding properly and so I am going to see her Monday so she can look at how she feeds.
I feel I shld tell you all incase doctors tell you to do the same. She would have felt full up but lost weight. She is only 3 weeks old.
Any thoughts on this?

Yoga.. I have now got a moby wrap and love it. I am not keen on holding her in the 'hug hold' as I worry her legs are too high and I am going to cut her blood supply off lol. so tomorrow I am going to try the cradle hold. wish me luck.

x

Hey all, I'm back to wondering a bit about what's going on. Can gaviscon change the consistency and whatnot of the stools? (sorry ) The constipation seems to have stopped but they're not back to normal -still quite thick and textured and we've even had some bits in

yoga did you manage to get the Enfamil A.R? I'm guessing the A.R is anti-reflux or something? Do you think the cow and gate milk my DS is on could be making it worse? Since switching back to the first infant milk I've noticed the reappearance of the explosive painful-sounding farts, as I have mentioned, there's also a lot more spit-up (had hardly any on the comfort milk) and he's more windy in general. Not sure if I'm just being fussy now or what :(

Hi, hope everyone is doing ok.
Had hospital appointment on Thursday. Consultant wouldn't prescribe anymore medication for her, and we are to continue on the IG and Ranitidine. I asked him why she would be screaming and refusing feeds? Would this be down to her reflux?
He says she should have shown improvement on the neocate within two weeks ( now into are fifth week on it ) and is puzzled by what is causing her pain? He has agreed that she will be admitted to hospital this Thursday for 48 hours so he can monitor her ( as he is on call ). If she is still the same they will refer her to the Childrens Hospital in Sheffield for further investigation ( ie camera down throat ).
She has been referred to a dietician - anyone know what to expect from this?
Now beginning to doubt myself whether the pain on feeding is to do with the reflux? Is it possible she has now come to associate feeding with pain?
narmada I have just read on another thread about delayed gastric emptying - would this cause the pain/ screaming? Just trying to explore all possibilities as I am beginning to question everything now. Becoming slightly obsessed.
On the plus side she had gained seven ounces in 12 days ( which is a massive gain for her ) and is now 9 pounds one ( so the little feed she is having must be doing something!

Helli My LO had thicker poo too with lumps in it that looked like if you leave milk standing with Gaviscon in it. It made for easier nappy changes for us. I don't see the lumps now, but he's on solids so all is different. I know adults get bad farts after constipation (I'm a general nurse) so it could be that? (But I've no experience of changing feeds with a younger baby.) I can't get my LO to drink any comfort milk except the Enfamil A R - we're just trying that now as we don't have enough Gaviscon doses to cover milk feeds and meals.

Hope the hospital visit goes well sbeth

sbeth1976 - I think you need to try and push for stronger meds than Ranitidine (as normada said Omeprazole or Lansoprazole). Also, her Ranitidine dose seems quite low and it's very weight dependant and also one can develop tolerance to it quickly so it stops being effective. When my dd was put on Ranit she was 8 weeks old and weighed around 5kg and the GP said we can give between 0.3ml to 1ml 3x daily and left it up to us to decide the dose, we found we had to go to the higher end to see any improvement, ended up starting with 3x 0.5ml and went up to 3x 1ml before switching to Omeprazole. When we were on Ranit as my dd gained weight, I just recalculated the dose myself when I felt necessary, this is the formula from BNF for Children (it's an official publication used by the doctors for clinical use of medicines in children):

Child 1?6 months 1 mg/kg 3 times daily; max. 3 mg/kg 3 times daily
Child 6 months?3 years 2?4 mg/kg twice daily.

I think the NHS paeds are quite reluctant to prescribe PPIs (Omep or Lansoprazole) so we went to see a private GI Paed who put her on Omep (7.5mg twice a day, so 15mg/day total) and then when we saw the Paed on the NHS, he agreed to continue with this treatment but did mention we were lucky to be on such a high dose as if he was prescribing it first, he'd have gone for max of 7.5mg once a day! Also, although Omep helped my dd's reflux symptoms and she's not in pain as far as I can see, she's still refusing feeds (pulling off breast and crying after 2-3 mins nursing) almost 8 weeks after starting on Omep despite us now giving her the max dose for her weight. We have recently switched to Lansoprazole as I thought that maybe it was Omep just not working properly but after 2 weeks on Lansoprazole (which is also controlling her reflux symptoms well but is giving her less gas/tummy cramps than Omep) there is still no improvement with her feeding. I also feed her little very often and do a lot of sleep feeding during her day naps and at night. I am beginning to think that there is something else going on beside the reflux, possibly dysphagia (swallowing difficulty where the liquid/food aspirates into the person's airways and/or lungs). Maybe you can check for that as well for your dd? They do a test for dysphagia called modified barium swallow, which is different from a normal barium swallow meal done for reflux.

I don't think that the delayed gastric emptying will make your dd cry with pain as it just means that she gets full up quickly and doesn't feel hungry as much. However, if you suspect that's what she may have, you can maybe ask your paed for Domperidone but I have to say it did nothing for my dd so we stopped after 2 weeks!

It's a nightmare trying to figure out what's wrong as I also still don't know why my dd is not eating properly. I'm so envious of other mums whose babies who feed well (either bf or ff) but then I obviously won't change my dd for the world!! :)

Hi all

Short post as am wrecked after travelling to a wedding this weekend. DD's first flight and she was such a fab girl, no crying either way!!
Helli have not tried the Enfamil A.R yet, wanted to get wedding over before changing a variable, will try this week.
As for comfort milk, I would change back if your LO seemed happier on it, what was the reason for changing again?

milamum thanks for the advice. For her weight she is on the max dose for ranit.
You can drive yourself crazy trying to work out what is wrong with them. Dysphagia is one of the things I had considered - she definitely feeds better when she is very sleepy, which apparently is one of the signs.
Also had a few very scary episodes of choking as well.
I too get very envious of other people's babies that feed well. We took A out for the afternoon ( v brave of us as most of the time we daren't venture out due to her feeding ) yesterday and she needed feeding. Screamed the place down. Most people looked quite sympathetic but some looked at us as though we were abusing her.
I keep hoping this is just a phase but she shows no signs of coming out of it.

Hope everyone is well, and it's comforting ( although I wouldn't wish this on anybody ) that my baby is not the only one going through this.

sbeth and milamum could you tell me a bit more about this dysphagia? My DS has trouble feeding and his feeding is best and cry free when it's a sleepy feed. We're not sure he has reflux as when he's not having crying feeds everything is great. We've decided we might take him to A&E about the birthmark. We believe it is becoming ulcerated and that it is causing the problems with feeding as when I changed his bottles a few weeks ago the crying feeds all stopped but they've started again and his birthmark has grown quite a bit in tandem :(

sbeth i know exactly what you mean on all accounts. I worry when going out that he's going to struggle and hate sitting there trying to feed when he's crying and struggling but if you don't keep with the bottle he'll either go too long between feeds (today for example he went 4 1/2 then 5 1/2 hours and has only had 3 bottles today :( ) or won't feed. It's just so hard to know what's wrong -is it reflux, birthmark, milk or something else entirely?