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.

Maybe keep on excluding either dairy or wheat, and see if they have any effect. When I try anything, her symptoms come back with a vengance.
I know it's not allowed here, but (((hugs))).
How old is he? DD is 9m now and things are a bit easier, we still have some awfull days, but the good outnumber the bad now.

I so wish I had found this thread last August.

DD is now 8 months, still vomiting, only difference is that its now, with weaning, multi coloured.

We seem to have the pain under control thankfully and have the resulting sleep issues 'managed' as well. Can finally get the daytime naps done as long as she is in the sling, or semi propped in the buggy.

But it was so awful for a long time so I really do feel for those of you still going through it. I used to get so upset at weigh-ins where the only baby in the room screaming was mine, and all the others (it seemed) were gurgling and lying on the mat smiling. Or happily sleeping in the pram. And the useless useless advice HV's gave (eg at 12 weeks, oh some babies just dont need as much sleep when DD NEVER slept in the day; or a look at me when I told them she would scream for 11 hours a day often)

Luckily I have found one very helpful, knowledgeable GP at our surgery, unfortunately the rest not so and the only time I saw one, even though we had been seen and diagnosed by the paeds sent us packing with a 'shes not actually losing weight, come back when she is'. I almost threatened a sit in in the surgery with her screaming allday until he took me seriously

I happened to get talking to a lady one day recently who worked for one of the best reflux consultants in the area. Her advice on weaning was to take it very slowly. I'm passing this on as it was some of the best advice I've been given. Having noticed DD had awful trouble with wind, cramps and vomiting after banana and apple I took her (privately) for intolerance testing to discover a further 12 intolerances. Wish wish I had known that sooner, one was wheat and lets just say I do love a good bit of toast!

Will read all the thread later and see if I have anything helpful to add.

Oh Lady, I am so sorry you are having such a hard time. Is it possible for you to see a private paed? I know it's not an option nor necessarily any better than NHS but hey, you never know, a different opinion may be just what's needed.

I know what you mean about the miracle cure.

For some reason, the lansoprazole has not neutralised DS's sick - it still smells like horrible acidy sick. I think the problem is that I can't get it into him on an empty stomach. Mornings are a no go as he is screaming for a feed and cannot wait the required 30 minutes after taking the meds to feed; I try and give it 2+hours after a feed, but I know for a fact his stomach is not empty at that point either because he frequently regurgitates curdy solids. arrrghhh!

Yay! DS results for spinal muscular atrophy came back clear. massive relief all round.

Yay... Congrats to you Narmada. Thank you for sharing your fantastic news! Made my day...
We're still two steps forwards one (or three) back! Ditched the rice idea and just going for mashed veggies which she seems to like but still struggles to 'process'. Just had massive straining episode followed by poo that was (I swear) just mashed carrots! I know it's supposed to turn the poo orange, but surely it's not supposed to come out(3 days later) looking exactly the same as when it went in?? Maybe things will be better in a few more days.
Still massively sleep deprived, so know how it feels for others - dd naps once or twice a day for 20-40 mins, on me or in the buggy, never still. And wakes every 50-90 mins through the night and we can only get her back to sleep by feeding. Sooooo sick of people saying things like 'have you tried putting her down?', or 'could you leave her to self soothe?' yeah right!!

On a different note - we tried a swing but dd hated it, so it's up for grabs. Been used literally half a dozen times for minutes (if not seconds!) It's not a flashy one (think it was 30 quid - didn't want to spend loads if it wasn't going to work!) If anyone can use it, we need the room!

Also to Plastic... Forgot to say that I came back from my first 'support' group in tears after all the other babies had laid on the floor smiling and gurgling, or sleeping, and some smug cow proud new mum had told me that her baby never cried because she could meet all his needs. I can laugh now, but oh boy she hurt my feelings. Personally I think we're meeting needs she can't even imagine, for 20hrs a day then getting up having had no sleep and listening to our dlos turn themselves inside out again. God, we're brilliant!! Off for a screamy walk now cos the sun's shining and most folks in our neighbourhood are getting used to us by now!! Hang in there - apparently it gets better

Have read some of the thread

Lady, I hope I'm right in thinking you are starting weaning and are having trouble with constipation?

DD has the same problems. I read somewhere that babies with the opposite problem of diorrhea should be treated with the BRAT foods. That is:Banana
Rice
Apple
Toast

Funny how thats not well known as most baby weaning foods contain at least one of most of them!

On another note I was talking to my Chiropractor about the problem and she does nutritional testing. Was expensive ut it turns out DD has 14 food intolerances including, as I suspected banana, apple, wheat, broccoli, tomato.

Food for thought at least...

Ellnlol - thanks, it was a huge relief about the SMA.

I really know what you mean about the 'have you just tried....' thing, I know people are trying to be helpful but it so isn't. As if you would be going to such lengths to get them to sleep if you didn't have to. I also have had several experiences when at playgroups and similar, looking at these babies just dozing away and wondering why mine can't be like that - so frustrating, even tho we love 'em.

Re the woman who told you she could meet all her child's needs - oh my good grief, how did you not manage to tell her to shut up? What a ridiculous thing to say. No doubt she just has an easy baby. But hey ho, that baby mightn't turn out to be such an easy toddler or teen. So there!

Bananas always bunged my DD up when she was first being weaned, for what it's worth. This was especially true the less ripe they were.

Hi ladies thanks for all of your weaning advice. The lactulose finally worked and DS finally seems much better and more regularly! The sickness has subsided but we're still having more miserable days than happy ones. He seems so very grumpy and is waking quite a lot more than he used to. Well, I guess they dont say the reflux rollercoaster for nothing eh? narmada yay for you re SMA results you must feel very relieved. Hope you are all having a good weekend?

How's everyone gettimg on? hoping that silent equals good!

DS is getting worse on the reflux front, which makes sense as he has now upped his milk intake. i am grateful he is eating but i wish this bloody condition would bugger off.

narmada poor you with your Ds. It really is a pain in the ass isn't it? We've had a miserable week too. Lots more smiles but still arching and refusing milk. He has started gaining weight steadily again so hoping that it continues. Have had to revisit gp about Ds chest and I shall quote 'his chest sounds like a loft full of pigeons'. Hmmm so very rattley and now on steroidal inhaler in addition to the other 2. Hope that they do something poor little man is wheezing like an old 60 a day chappy! Are you seeing the consultant again narmada?

oh lady, i reckon your DS and you are going to get your lucky break soooooooooooooooon. sorry you are having a hard time still.

DS as of weds being transitioned to neocate due to suspected milk intolerance, on advice of consultant - hpoing it's got something to do with it but digetive system/ muscles prob playing a major part too as he has also been dignosed with transient infantile hypotonia eg - poor generalised muscle tone.

He has started refusing some feeds too, not by arching but by crunching himself up into a ball and rotating his head. It's very unnerving. nothing to d with the neocate as it started on the usual formula. Joys....

To any post weaners out there...? We're on our third attempt and dd can tolerate mashed veggies. That's it. Fruit's a non-starter and the grains seem to be out too. But the bit I'm struggling with is that she seems fine with breakfast and lunch but if we feed her after about 2pm we're all up all night. Even more than usual, with her moaning and groaning, thrashing about and arching and her new trick - banging her head. Anyone else gone through that and what did you do? It's hard enough to keep her comfortable without aggravating things! Thanks.

hello,im a newby.dd 14 days old has been diagnosed with reflux by the hospital after being re admitted with aspiration pneumonia.She also has a cleft soft palate so Drs are unsure as to whether reflux or cleft caused the aspiration or possibly both She is on gaviscon (in feed) dom peridone and ranatadine.She has lost all the symptoms of the reflux now but is constipated maybe due to gaviscon.Has not gained weight since post birth loss and i am having to wake her 3 hrly then keep her up right after so getting no sleep and worrying re another aspiration.
What are the alternatives to gaviscon and who would i speak to about it,gp?
Happy to find this thread tho.

gentle bump

Gaviscon is infamous for causing constipation. You could speak to the GP about trying carobel instant insead, which i have found mildly less constipating although the poo even on this seems harder to expel and is much more formed.

I am really aghast that it appears you've just been sent on your way.I think the GP can prescribe carobel but are they referring you to any sort of feeding specialist or paedeatrician??

ledkr welcome! sorry, I didn't say that in previous post. Trying to concentrate on jiggling my own refluxy babe to keep him asleep.

saw mw for last appointment today and she rang gp and said that we need some guidance and support and he aggreed,he has also referred us to a paedeatrician.She is already under the cleft palate team.
She isnt gaining weight atm,we are waking her 3 hrly to feed her but she is still very sleepy so quite hard,i feel a little pressure,its very hard to deal with so many different issues with the threat of a further aspiration looming.She hates the ranitadine,it tastes horrible,i wonder if she needs all 3 meds but at least i can ask drs now.

gosh ledkr I am so cross on your behalf that you've not had proper, co-ordinated help so far. Glad you've now got a referral in the pipeline - I do hope they have got you down as urgent. Are you breastfeeding or bottle-feeding? If the former, let me know where in the country you are and I will look up lactation consultants in your area if you think it might be helpful. They are really well-versed in feeding issues and should be of some help, perhaps while you wait for the other appointments to come through.

I am not surprised you feel pressured - anyone would in your situation. Ranitidine does indeed taste horrible - what baby would like peppermint, for crying out loud?!- and as far as I know it doesn't come in an unflavoured version for pediatric use. Have you tried syringing it right into her cheek as opposed to spooning it into her mouth? You are probably doing that already... but if not it may make the whole experience a bit less stressful.

There are more effective medications than ranitidine that can be prescribed in the long run, and IME they don't taste as bad (e.g., lansoprazole comes in strawberry flavour). However, their side-effect profile is a bit worse than ranitidine and I don't know how often they are prescribed for neonates as young as your baby. Certainly mine was prescribed this more powerful class of drug at around 4 weeks of age. I have no medical training I should make clear, just speaking as one parent to another. I know it is horrible giving babies medication.

Hang on in there, hopefully your issues will be sorted with some co-ordinated help.

Hello, started to read the thread but felt completely overwhelmed, so apologies if I ask questions that have been answered elsewhere...went to see GP on Friday because I thought LO might have reflux. He sent us straight to A&E because I mentioned that LO (4 wks old) is gagging slightly / trying to clear throat in the night, before swallowing. A&E prescribed infant gaviscon and told us to feed 90 mls every 3 hours or so (but on demand), where previously baby had been having 90-130 mls. She also suggested 60 mls every two hours, but when we tried that yesterday baby just cried with hunger until we gave him the 30 extra mls. He seems to be getting worse and last night didn't sleep at all. He is not really being sick that often (only every few days, nothing unusual at all) but it's the gagging and discomfort. He is gaining weight well at the moment too because he is continuing to feed. But how do we survive this? We were up all last night with him, but tomorrow my husband goes back to work so he won't be able to spend hours awake. We are mixing one sachet gaviscon with 100mls of feed for a 10lb baby, does that sound about right? Sorry for all the questions, but they just diagnose you at hospital and send you away without any support at all. We tried keeping him upright after feeds (he is FF) and winding regularly, nothing seems to help (or maybe it is and things could be a lot worse). He is also now constipated (probably from the gaviscon?). Please help!

feelinghip poor you and poor DS. But welcome!

Re feeding smaller volumes more frequently, I have found it makes not a jot of difference, but others have different opinions. Positioning makes absolutely no difference to our son either. He won't even sleep on his tummy, which is what many reflux babies prefer.

IME gaviscon is both constipating and totally useless as a means of addressing reflux. Again, others have found otherwise but that's my experience, and I don't think it's that uncommon. If he really is in discomfort and sleeping very poorly, he may need something else. I would press for a referral to someone who really knows their stuff on digestive issues in babies. It could be reflux, and/ or cow's milk protein intolerance (relatively common and often co-existing with reflux) or it could be something else entirely, or nothing at all! The GP should do you a referral. DOn't let them fob you off with the old 'well, he's putting on weight' line.

Actually i could do with some advice myself re lansoprazole. Is anyone's baby on a higher dose than 1mg/ kg?

feeling sympathies here,i am very new to this and also dealing with dd having cleft too,am trying to remain relaxed at the mo,gp has referred us to paeds and my dd is on other meds as well as gaviscon,she is a bit constipated as in strains a lot to go and only once a day,busy now will catch up tomorrow,get gp to refer onwards.

my baby was put on 15mg lansoprazole per day at the age of about 6 weeks. can't remember what she weighed, but she certainly wasn't 15 kilos! the paediatrician said that this is a perfectly acceptable dose (since confirmed by consultant at great ormand street) for a young baby, but he did have to ring the gp when i asked for a repeat prescription. he also said that you're never going to get all 15 mg in a baby once you've ground up the tablet, mixed it with water, stuck it in a syringe and then tried to squirt in their moth and get them to swallow (and not vomit it back up). dd had a severe inflammatory allergic reaction to cows' milk that took about 10 weeks to get rid of entirely. we are now phasing lansoprazole out, but at 7.5 mg per day she's still on more than img per kilo. really feel for you re the neocate - we started at 7 weeks when her taste buds were very naive and now at 20 weeks she doesn't know any different. will be "interesting" to see if she starts throwing a strop when we wean her and she realises that there are far better tastes out there!

We were on 15mg when DS2 was 10kg but the registrar got twitchy so we've decreased it a little and actually, for us it's been okay, although DS2 will be 1 tomorrow and his symptoms are much improved. It took 10months and we still carry a muslin, but we are getting there.
FeelingHip our DS1 had silent reflux and used to choke twice at least every night for about 5 months which scared the crap out of us. We were put on ranitidine in the end and that sorted DS1 out. DS2 started the choking from about 8 hours' old and was on all the meds by 14 days as my GP knew I was a bit of an expert by then unfortunatly, after DS1! Gaviscon made both boys constipated. I would say learn as much as you have the energy for and then be clear about what you want form your GP and keep going back (with a partner in tow so they know you are not being a fussy mother, as happened to me with a consultant) until you get what your LO needs. Good luck. My carpet is wrecked, but the nightmare first 9 months is thankfully behind us and we are coming through it stronger for all our trials (and will not be risking a third refluxy baby!!)