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.

Lady, your GP is just as uninformed as most! They really frustrate me with their lack of knowledge on this subject, and the whole they are putting weight on so it's ok thing makes me sooo mad.
I've found that what i eat has a massive impact on how DD is pain and sickness wise, and dairy is a well known irritant for reflux babies. Give it a try, it may not help but it's worth it if it does. Try cutting out dairy then soy, for margarine try Vitalite or Pure sunflower spread. I can give you loads of other help if you need it.
Try wheat/gluten last as that's quite tricky when you're already dairy free!
My DD is a bit unusual in that sh has reflux and multiple food intollerances, but it's not unheard of so always worth a try. It was another reflux mum (her DD is now 5 and has outgrown all her problems) in our village who advised me to try.
Zantac will try to neutralise the acid, domperidone tries to reduce the amount of sickness by speeding up digestive transit.
Omeprazole in the correct dosage is the best, it stops their little bodies from producing acid in the first place, no acid no reflux pain, but will take a couple of weeks to get to full effectiveness and let throat heal.
I needed to be very assertive when it came to the docs, tell them your DC is thriving because they're comfort feeding to ease the pain which is actually counterproductive. It's their job to help ease your baby's pain, they CAN prescribe Omeprazole but may not be too sure about it, and a maximum dose per DC's weight (as my DD needed) may need a referal to a paed consultant.)
Good luck, with the correct treatment and or diet choices it does get easier. DD spent the first 4m of her life screaming in pain, she's a joy to be with now, still lots of sick, but a happy girl.

I find it difficult to know if the meds are working as they should as dd is my first so I have no clue what is 'normal' she doesn't seem to have as many grumpy pain days. But is still foaming, hiccuping, sicking and stretching up and back after some feeds and last night she was choking on something in her sleep (that's the bit that scares me). Does this mean that even though she is happier I should go speak to the GP again or is this as good as it gets?

I've accepted that a reflux baby is always going to be sick till their body matures naturally, the main thing for me is that DD is pain free. She still has some fighty feeds and does the choking in her sleep thing when she's got the snuffles or excess saliva, probably from teething. Even though she's now mostly pain free I still put her on her 45degree sleep wedge to help alleviate the physical symptoms. Try getting one of the AR infant sleep wedges like mine, it may help with those symptoms.

fonts my DS does the choking thing too, even when he is upright. My DD1 did it too, she stopped i think when she was about 20 weeks. She was also a silent refluxer. no advice but just wanted to share.

On a different subject, has anyone had any success with domperidone? we got prescribed it by the GP this a.m. as gaviscon not working. i am really nervous about giving DS who is only 2 1/2 weeks old 'proper' meds. on the other hand he is unhappy 90 % of the time he is awake and his sleep is very disturbed, along with all the other reflux symptoms of course. It is killing me...

Narmada my DS was prescribed IG from 6 days and was hospitalised at 11 days due to sickness. We were put on domperidone and ranitidine when he was 14days. We did it strictly but found it didnt affect his proj vom at all. We thought that it also caused him to have really bad tummy griping so as it made no difference to the sick levels we stopped it as he wasn't in any pain then. It depends on how quickly your LO gains weight but the dose has to be increased as weight increases. I know from the research I did at the time it's not licensed for use in babies in the US. Gp just represcribed it for us but holding off at the min. Hate the thought of him being on things for no point. It's a catch 22 either way tho if he's unhappy then maybe worth trying to see if it works for you. Does that help any sorry it's not a success story?x

Morning, does anyone else have trouble with giving ebm in a bottle? Dd gags on bottles teats (and dummies) wondering if it is related or just a particular quirk of dd.

Fonts mine does really badly. Going to watch join bishop on fri and so nervous for my mum doing the feed. Having practice run first and maybe try a training beaker and see if that works x

Bugger it, I'm supposed to be going to a baby free wedding in three weeks and I have a feeling I won't be able to go as it won't be very fair on my mum if dd isn't able to feed. :(

Sorry Lady, I just realised that I worded that badly and hope you don't now feel worse about leaving your lo for the evening! I would definitely try if it was the evening, I just don't think I should do the wedding as it is the whole day and evening.

No, I know what you mean completely. We went to one last week and it was so stressful with both LOs. I cant remember how old your LO is but think those little cups have a sucking bit inside that can work or maybe try cup feeding from bottle lid? Will try the cup on mine as a practice this week and see how we do. Will let you know :)

Try the tomme tippee evolva cup with soft spout. like a cross between bottle and cup, it needs a bit of effort to suck, my DD is better with this as she doesn't gulp and choke (as much) when having the occasional bottle.

Thanks ladybiskybat for sharing your experience with domperidone and ranitidine. We went to a and e today as DS wasn't sleeping for more than 45 minutes at a time and feeding constantly (he is a gorger I think) and I was feeling so, so desparate. Of course he behaved impeccably there but nevertheless, the paed we saw prescribed ranitidine to give in addition to domperidone, we pick the ranitidine up from the hosp pharmacy tomorrow as it was closed today.

I am beyond tired, just living on the edge. To add to our woes, I think DS is reverse cycling - e.g., sleeping more in day than in night (obv neither very well) and we have a toddler: even with a fantastic DP who is willing to take her out and entertain her, it is hard to rest in the day when they are in and out of the house.

I am this close to giving up breastfeeding and putting him on the bottle, which would break my heart but would at least mean DP could do a split night shift with me.

This is so hard. I feel like I am in a living nightmare. Sorry if that sounds overdramatic. Some of the stories on here are truly a lot worse than ours, I do recognise that.

narmada sending big hugs. I completely empathise with you as it sounds very similar to us. It's so tiring in those first weeks when you dont get to rest and nevermind having a toddler as well. Could it be that your LO is having a growth spurt too and cluster feeding? My DS comfort fed lots and I remember being told by a registrar that I was over feeding him as baby's have small tummy and that's why he proj vom...although he would always feed after he threw up and keep that down?! Im lucky that my DS2 sleeps fairly well at night but my DS2 is an awful sleeper waking lots during the night and between them im shattered the next day. Is there any chance you could bf and your DP could take over til baby sleeps and you get some rest? It's easier said than done tho- I know bf is such a commitment and understand why you're at that point. Do you have any one else who could help out? Maybe you feed baby and they could have LOs whilst you rest? Have you tried baby in a swing? Worked wonders for us. You put the cot on raised bits? Hope you get some sleep x five thanks for advice re cup will get one tom and see how we do :)

lady thanks for your post, lots of sensible ideas. will have a think about them

gotta get up and pace to get DS off to sleep...

Ok, please no more sick today. Thanks.

narmada - big hugs. Sounds like you're having a nightmare of it. I just wanted to say that of course you want to continue b/f and I really hope you do. But if you do think you need to give up, think about just giving a night time bottle. Yes it will impact on your supply, but it may not be irreversible. I gave night time bottles up to 12 weeks then cut them out and returned to EBF. Just something that might be worth a try before taking a decision to give up completely. Hope you don't need to though.

We started DD back on IG yesterday. Very little sick today. Fingers crossed.

Is there something in the milk today? Awful day screaming lots and nothing was right, eyes full of tears. Also started with sick again. Lovely. Hope you're better than us :(

gaelic glad the IG is having an impact. Long may it continue, hurra. It is so fantastic when something seems to make a difference, and I dunno about you but those good days are the motivation to keep going...

lady sorry about your day, it sounds very tough indeed. It is so hard to see them cry real tears. Poor wee things. I am sure it is something deeply biological too but as soon as my babies start crying I get uber-stressed, which really doesn't help.

We are on day 2 of the ranitidine/ domperidone regime. So far things seem a little better and I got more sleep last night so everything seems more bearable. Still BF, it is not easy but I absolutely hated all the sterilising bottles with DD so I am pressing on.

I am feeling cautiously positive but acutely aware having had one refluxer already that things can go south again rather sharply. Me? Pessimistic??

ONe question - do any of your LOs wheeze or rattle? DS is doing this on and off. I don't know whether it's just par for the course or whether I should be more worried than I am about it.

MHope everyone's LOs behave impeccably today and tonight.

Oh and gaelic thanks for the tip about the evening bottle. Will definitely keep it as a reseve option. Oh yes!

What a couple of days. DS ended up at a and e on sunday eve a he was grunting as his was breathing like as if he was straining for a poo and then he had these strange tic-like things, several of them. Nhs direct said to take him up waited 3 hours to be seen after triage and ended up on paed ward. They dont know what these twitches were but think could be side effect of Lansoprazole. Have been re started on really low dose of both domperidone and ranitidine and have to go back for bloods tom...so on top of DS being extremely upset with reflux at the min now has to endure more prodding as they can never find veins. Was so scary with the twitches. Anyone else ever had anything like this? And there is now sick, lots of sick :( thought it had vanished so feeling a bit rubbish about it all.

Sorry to hear that several mummies and babies are having a hard time on here at the mo.

Lady the one thing I have learnt above all else is to enjoy the good days, but not to assume that it is a forever solution. I'm sorry if this is too pessimisitc for those of you who have had a good run, but I have really struggled in the past with the disappointment when we go back downhill again. As I say, I've learnt to accept the good days as a good phase and really enjoy them while they are happening. In fairness, at 8 months, DS2 is improving, but teething really sets us back each time, as do colds.

lady sorry that you had such a bad time. Have you done any research into Sandifers? I don't know if it is the kind of twitches you have been seeing in your lo but it may be worth looking into. YouTube has examples from mums who needed to film their lo's to show the doctor. I think our Zantac prescription is no longer working so back to the GP.

lady that sounds awful. and poor you having a 3 hour wait to be seen. I hope things improve for you soon.

My DS sometimes twitches when (i think) he is chronically tired. it's usually his leg that does it. I suppose it's like that 'falling' senstion you get when you are in bed.

Hi ladies thanks for the messages. Fonts I had the courage to ask if it could be Sandifer's as I looked at youtube and have noticed him doing very similar things to those but never thought it was anything but my little boy and his uniqueness! Doc looked strangely and then came back later saying it could be so obviously went off to google herself. (She was lovely tho). Have got to push to be seen in clinic, but no sooner as we were on the way home my hv rang to say she'd had call from clinic saying we'd been in so hope it's sooner rather than later. The meds we're on are so low dosage not sure they'll help, surely better than nothing though?

narmada thanks for sharing bout DS. My LO starts with his head jerking and sometimes does his arms and legs but not all of the time. Have noticed lots of episodes today. Got jabs tomorrow let's hope it's a good day:-S

Lady can you let us know if you get any advice or info from the clinic (fingers crossed for speedy appointment) about Sandifer's. My dd does the stretching her head back a lot and the arm thing on her bad days, it looks like both arms have suddenly been yanked back like a puppet on a string :( I have only done my own research on it and get the impression that it is a bi-product of the reflux, causes no harm and stops when the reflux symptoms are under control. I would love to know what a professional says about it. I haven't spoken to GP myself as I sometimes feel like I'm doing too much self diagnosis and finding things that are wrong iykwim.
On a massive good note I finally got dd to take a bottle of ebm! Hooray! Can thoroughly recommend Breastflow bottles, heated so milk is warm and so is the teat. As soon as the teat was warmed she started to suck. I think it helps that the teats are shorter than others and seem softer too.