All new deluxe reflux support thread

[buttonmoon78]

Welcome one and all!

None of us are here through choice. And none of us would be giving our babies such a cocktail of drugs through choice. We do what we have to to get through it.

Don't make the mistake of comparing your baby with others - that way madness lies!

Can i add the message that you can't underestimate the power of the swing to give hands free time!

Hi,

can I ask about how people are managing gross motor development milestones in a baby who can't/won't lie on their back? I am concerned our LO (16weeks) will not learn to kick or roll over if she is on an incline or tummy down all the time. She even sleeps on her tummy on a slope with a breathing monitor.

HV suggested "back time" like the tummy time ordinary babies have when she is nearing a feed and has an empty stomach.

Empty stomach?! DS can spew acid from 4hrs previously and then need a feed!

I'm not that worried. Mine has the opposite problem - can't go on his tummy. It WILL work out ok in the end. DD1 was just the same, never on her tummy. She is the best runner in her high school and has just beaten the county champion.

Glad to hear you had a good day Sarge - I need to get out more - its official - even the doctor said it! She was on best behaviour at docs appointment as usual but doc said she doesn't think her reflux is so bad as she is not crying a lot and the main issue is her discomfort and lack of sleep and wanting to be upright to go to sleep - if we can crack that I think we'll all feel better. I'm sorry for those who sound like it is really bad - feel bad to be a moaner when doc says this, but maybe I'm in a false sense of security again and tomorrow will be a bad day again?? I'm finding that my attitude to this changes on a daily basis, but one thing I'll say is that reading this forum definitely helps me feel like I'm not a nutter!

Quick Q for those of you whose babies like being in slings/carriers - since mine does and will therefore spend a lot of time in one, does anyone have any recommendations for ones that are good for back/spine/hips (hers and mine!) - I heard the Ergo is good but needs an insert for babies under 4 months so not sure, also it would be fab to have one that can be got on and off with minimum of fuss, possibly even keeping baby asleep!!!!

Any suggestions welcome!

Have a good evening everyone, I am willing us all a good night.

Also just to say buttonmoon - you are so right - have been driving myself crazy reading books, comparing my baby to others, worrying she's not doing this or that - need to stop that RIGHT NOW! thanks for the wise words!

BTW - she has had a very sleepy day today (making up for last night maybe??) hence why I have had time to come on here several times!

Halliwell also remember that some people are sometimes a little 'economical' with truth/memories. My friend said to me the other day that I should get him into a routine as both hers were perfect GF babies, sleeping through at 6wks etc. Which is soooo not true. Her dc1 was - she loved the routine etc but dc2? He didn't even pretend to try to sleep through for months and months and was still having regular night wakings at 2yr+. Bearing in mind he was only 4 in Oct she's def got a bad memory

Well, we had a dreadful night! He slept til 11.40, took 6oz like a dream and went straight back to sleep. Woke at 3.50 choking on gallons of acid. When he finally calmed down enough he had another 3oz and did exactly the same at 6. I just don't understand. Why doesn't the ranitidine work? And how can he still have stuff to throw up if he's on such a large dose of domperidone?

I'm going to speak to the paed again today. I'm just so fed up. I can't even see the carpet on the landing as there's so much washing waiting to be done. I've totally bypassed the laundry basket as it holds about 1/2 a day's worth! I could probably tolerate that but it's so hard to see him in pain and struggling to breathe as he's drowning in his own stomach acids

And then this morning he is such a chirpy little angel it makes up for everything sort of and he's sat in his chair bouncing around being just lovely and I get weepy all over again

Hi everyone, finally managed to get on here again. Been having a nightmare with my little boy and his reflux for the past couple of weeks again, I really don't know if I can stay sane anymore as everyone keeps telling me it is normal that he can't swallow and struggles to breathe when upset!! We've been on gaviscon for a few weeks now and 2 weeks ago paid to go see private paediatrician who prescribed 1ml renatidine twice a day plus continuing with gaviscon. Gaviscon has made him so constipated it's untrue. In the past week he has been getting upset at around 7pm we can"t comfort him and have had to take him out in the car to get him to calm down. when he cries he struggles to swallow and breathe and I find it so scary. Has anyone else had this, please tell me that he won't stop breathing as I am petrified and don't know what to do. I am dreading him getting upset as I know what's coming. When he breathe he sounds like an old man and has very hoarse like breaths. Does anyone have this? Button you mentioned in your post that your LO is choking on his acid I wonder if this is similar to what's happening to us??
I have booked another appointment with the pead tonight, can anyone suggest what I should be asking? Any suggestions would help. Thank you!

Also forgot to ask, does anyone use Aptamil Comfort Milk someone told me that maybe I should try that and ditch the gaviscon as my little boy doesn't throw up he has silent reflux?

Hey Bubalie sorry to hear you're having such a tough time. Couple of things we do that might be helpful. We had the same prob with Gaviscon - we gave the 6 sachets max in 24 hrs and ended up with a screaming baby for 2 days who couldn't poo- we then took the Gaviscon right down and now only give her half a sachet every other feed - she poos for England now! She's still sometimes a bit sick, but not usually too much and if yours isn't, i would think about reducing the gaviscon. We also use the Aptamil comfort milk which seems to work ok for our LO, I haven't tried many other formulas but when we first went onto formula we used SMA and she would throw the whole lot back up. Just be aware that Apt comfort is a bit thicker and with a whole sachet of Gaviscon which also thickens, we had a nightmare with her not getting it through the teat, so either use half a sachet which is ok or maybe a bigger teat, though we tried that and flow was too fast. Hope that helps and things get easier for you. I know its so so hard but try to take each day at a time, take a walk if you can (with or without LO) and look after yourself - you sound like i felt last week and before and its not a good place. Take it easy. xxx

Quick Q from me for everyone..... any sling / carrier recommendations for 7 wks onwards (would like it to last a good while) - anyone using an Ergo?

bubalie - meant to say that I think TBH, the fact we keep her upright after feeds and wind her really well and are generally really gentle with her after feeding has maybe helped as much as the gaviscon - i'm still not convinced the ranitidine is doing anything but persevering with it.

halliwell thank you so much for your suggestions. I keep him in upright position all the time and for at least an hour after every feed. I will ask tonight about maybe changing to Aptamil Comfort and either stopping or reducing Gaviscon. We have tried to take him off Gaviscon a few days ago as he didn't poo for 2 days, but feeds got so erratic again and reflux definitely got worse, that's why I think he needs a 'thicker' milk! We also give 6 double sachets in 24 hours so he has Gaviscon in every feed! Over the past few weeks I have had to help him poo, as in as soon as I see his 'poo face' I undress him and start lifting his legs etc. and he poos but it is very solid (sorry TMI).
On the sling issue, we have Baby Bjorn one from M&P, it is very good, but would say it is more for outdoor, I take my little boy for a walk in it almost every day and he loves it (I like the fact that it has a very good head support!). xx

Also, has anyone tried cranial osteophaty (not sure about spelling?!). Has it helped?

Bubalie my LO had the same breathing problems you describe, she was hoarse like Mariella Frostrupp, constantly sounded like she had a chest infection, phlegmy in her throat.

She has a combination of ranitidine 3 times daily, domperidone 4 times a day, gaviscon at each feed up to the 6 sachet maximum and paracetamol for pain relief. We do ALL the recommended handling suggestions, sleeping on a slope, tummy down, hold upright after feeds, wear in sling, change on a slope etc. DD is now 16 weeks and happy, yes actually happy, sleeps 8 hours a night, no more screaming. It is possible.

Breathing problems, no weight gain or extreme distress which continues after initial GP treatment are indicators for referral to a peadiatrician according to NIHCE guidlines on GORD. Go to GP, get referred would be the next step.

Hi Ladies,

I saw a thread from a MNer asking for happy reflux stories and to post on this thread.... I hope it was this one, if it wasn't I apologise!

My DD is now 15 months old. She was in hospital at 8 days old and diagnosed with reflux and potential cow's milk allergy. We were prescribed nutramigen AA and ranitidine to have 3 times a day. I remember it all so well, so much so I became very close to ending it all (PND as well).

She could never go anywhere without a supply of bibs and we had to put a couple of blankets on her playgym as her acid would come up at all times. The swing/bouncer was my best friend and I dreaded late aftenoon as colic kicked in as well.

Gradually we began to notice the liquid was less and less and her hiccuping and sickness was getting less and less (from about 7 mths), at around a year we tried to wean her off of the ranitidine and everytime she became bad at night therefore we had to carry on, but about a month ago, we tried again and since then she has been absolutely fine. We introduced dairy slowly and she is fine with it which is great news.

All I can say, is that it is true, it will pass. The sleep will come and the reflux will go. I so feel for anyone that is going through it and would not wish it on my worst enemy but it will go.

My DD is so happy in herself, she is super smiley and developing really well, it's as if the last 14 months never happened,, she is great fun to be with and sleeps really well now. There is light at the end of the tunnel, even if it doesn't seem like it, and it didn't for me!

Hey - does anyone find the Ranitidine makes their bub REALLY sleepy?? Mine was so sleepy yesterday (which I kind of enjoyed cos I was shattered) but she has been the same today and its freaking me out a bit now.... she saw the doc on Tues and doc thought she was fine and also said the ranitidine doesn't have side effects, and chemist said same, but looking online, so many people are asking same question, there must be something in it..... chemist suggested reducing the dose a bit to see if it made any difference....

Any thoughts? Thanks!

some ranitidine have got alcohol in them which can make them sleepy. it is very little the equivalent of 5mls of beer or something. it will be written in the information leaflet if there is alcohol in it.

my LO is now 20 weeks. she is no longer crying in pain and squirmy or chewing/grunting on fists after feeds but she still takes little amounts of milk at a time. have come to accept that this will always be the case

am just wondering whether to start weaning her? dont know...

BTW both my LO had reflux and neither of them rolled. they are supposed to start rolling at 16-17 weeks but mine never have - i think because they spend so much of their time sitting up. but on the other hand my ds started sitting up at 22 weeks and by 6 months was sitting upright unsupported very well.

Sparkle101 thank you for your story, it was me who asked for happy ending reflux stories, although tbh waiting until she is 15 months to see an improvement right now makes me want to cry, I was hoping 6-9 months!

Halliwell my LO started sleeping lots at 7wks when first on ranitidine and domperidone, because she had been so sleep deprived before and was then more comfy. She spent a couple of weeks being sleepy like a new born, now is normal. You may have got used to a sleeping pattern where your baby had less than they really needed due to reflux and now their body is getting the sleep they need. Also all babies have sleepy days, often when they grow or develop a bit. DD1 did this regularly after a growth spurt.

ekkiethump I am reassured by your DC not rolling at 17 wks, I think DD will be sitting up early too, she leaned forward out of her bouncy chair yesterday after I popped her in and nearly fell on the floor (had not bothered with the securing clips as was for only a second to administer to DD1 )

Hi everyone, we have been to see pead yesterday and he has increased Ranitidine to 2ml twice a day and continue with Gaviscon. he is also organizing barium test (I think that's what's called) - has anyone had this and do you know how long it takes for it to come through? We have another bad early evening cry and choking session last night again, I am bracing myself for tonight again and have kind of accepted that this is now going to happen every night :( :(. I am so tired and worried it is untrue. On top of all of this we have had the first injections today so not sure if that is also going to upset him!
Mama I am so grateful you mentioned all the wheezing and breathing problems too sometimes I just feel this is just us, people rarely talk about this. Thank you so much for your suggestions too, but I am rarely laying my LO flat he is always upright and when out in a sling rather than buggy. He mostly sleeps on me as he gets unsettled as soon as I put him down, but then I don't get any sleep :( I'm sure you've all been here but it feels so much better to share with people that understand.

hello lovely reflux ladies, just quickly hopping on the support thread while i have one hand free for typing (other more or less permanently in use keeping lo upright on chest). Have been lurking for a week or 3 as I moved from suspected my wee man has silent reflux to it being confirmed. Nursery nurse called in today (part of hv team) an got to witness him gulping up n down his acid, arching back, boob refusing mid-feed etc. (scuse spelling, wriggler is distracting + little sleep). She said one of worst cases she's seen for quite while .

he's 5 weeks and on gaviscon. Doing my head in, not following directions as syringing in 15mls into screaming fighting baby is truly awful. doing i in 5mls boiling water and letting cool before giving. not giving full dose, constipated even so.

main reason for popping on to thank everyone for all great tips / advice / loveliness on thread available even to lurkers

oops he's awake screaming n clawing...

Hey all - not wishing to take comfort in the situation of others but just wanted to echo how good this thread is because I feel like everytime I see one of my friends they think I am being a bit crazy and that my LO is fine even though doc and pead both said she has it - I guess if you are not there at 3.30 til 7 am with baby on your chest, unable to sleep, it does seem hard to believe eh? I'm glad I'm not only one in this position for a good part of the day and night, but won't it be nice when we can all lie down in our own bed without a baby on us (even though it is kind of nice too).

My LO has gone down as usual after her bath and is nice and settled, (though it took ages) no squirming, groaning/grunting.... so why oh why can't she do this after the night feeds?

Wishing you all a good night.

Three of mine had reflux, two went undiagnosed . My first was just dairy intolerant and sick alot....I would frequently be covered but he had a dummy and I think it stopped the pain. DD was a whole other story, she screamed day Drs weekly say she wasn't right. She was my third and so I knew that there was something wrong. She and I co slept until she was about 18 months. She's five but still gets acid when she laughs too much, as does DS now 9. DS3 had it too, possible worse than dd, we had to go to a consultant for something else who saw ds3 feed and said he had classic signs of reflux and to give him rantitide. Phew, that along with a swing practically saved mine and his life.

He's three now with no signs whatsoever.