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.

It really does sound like she needs to be seen by a paediatric gastorenterologist in clinic who can put her on the right course and give you both some relief. There's no need for you both to suffer so much.

Depending on your finances you could always consider seeing one privately if the NHS wait is too long.

Is she gaining weight OK?

I can't believe they just discharged you with gaviscon and no follow-up. Terrible.

narmada - we were told that we needed to follow up with the gp. i've started to look at going private but money is tight at the moment as my dp has got a new job and we're having to relocate to other side of the country. his new job does come with bupa but can't use that until he has started

i'm gonna try and get her into gp first thing monday, as she has now gone from bad to worst. her weight is fine - even a bit on the heavy side as when she has a bad day all she wants to do is eat

Hi guys
Going to speak to Doc on Monday and get referral to Peadatrician. Have had a very bad night last night and day today.
Last night she seemed to have a major issue with her digestion and was farting like a machine gun all night. Kept waking her and then she started crying. This seems to be happening since we started the Carobel. Was using Carobel with C&G Comfort. Anyone else had experience of this?
Didn't add the Carobel today and the reflux symptoms flared up again and she didn't sleep a wink all day.
I have now been holding her on my chest for 2 1/2 hours in order to try and ensure she is rested enough to have a feed that might take her someway through the night.
So tired. Isn't it funny that all her grunty, chewy, bubbly, hiccupy refluxy stuff disappears when I old her like this. Breathing was so calm I have had to check by putting my ear to her nose. Why is that?
Eyes on stalks.

Yoga, hope the Dr helps.

I've received my referral to the parent & infant mental health team today. Feeling a bit wibbly but it is for a 5 week baby massage course and I'll get to meet other mums in similar situations.

DS has stuck to a centile at last! I'm so pleased. I've stopped expressing as of today so he is now officially a formula baby, with a bag of defrosted BM a day. He does seem better. No need to give gaviscon with the comfort formula, and today we had what I assume is a normal baby-poo. Boy are they messy!

Just wish he wouldn't scream while feeding andrandomly afterwards. We now have our first cold at the same time as going in his own room so I am exhausted.

yoga - how are things?

cobweb - i've tried baby massage, we didn't get to do much (busy cleaning up sick lol) its great that he is sticking to a centile :-)

i've just come back from dr. we are now on ranitidine. he was telling me that baby can be quite sick then he touched her belly then we had projectile vomit everywhere. i now been told to take her back in 10 days and if no improvement then he will get us refered

Hi guys,
Boy am I wrecked we had a mammoth 13 hours straight awake yesterday!! Not even driving in the car helped! She then crashed, woke up for her 10pm feed and back out after 11/2 hours (that is pretty good for my LO) only to wake at 4am for 3hours. She then slept for 1 hour and has been awake ever since! So we are heading for 10 1/2 hours awake!
Went to GP today and have been prescribed Losec 5mg per day and I asked for a referral to the Peadatrician, it is covered by my health insurance through work, so that is a bonus.
Waiting to hear when we will be seen, hopefully within the next week.
Poor wee mite seems to be off her food too, I think things are going down hill a little, she is only having about 3.5oz at a time. At 7 1/2 weeks and over 11lbs that really doesn't seem enough.
Peachy I saw an improvement with Ranitidine within 11/2 days, however for us it didn't stay that way, just took things from totally unbearable to unbearable! I hope it works for you.
Cobweb if you haven't got one already, get a humidifier, worked wonders for my LO's cold. Good news about the massage, always good to chat to others in same situation.

Holy cow! I think we need sedatives! She is still awake - 21.00!!!!!! I tried to put her down to have dinner with my DH & she woke up crying after 15 mins. I'm destroyed! So tired, dear knows how my LO feels!

Need some advice. My LO is asleep!!! Asleep in my arms but asleep none the less!
This is a major deal as it is 10.30am and she has only ever slept at this time once before.
I'm not sure if it is because of 1 dose of Losec yesterday or the change to Cow&Gate comfort without any Colief or Carabel.
Have phoned Doc to see if I can get the Losec in liquid form as the tablets are too difficult to administer.
Anyway - question is should I stick to the C&G for a few more days or assume she has some issue with Milk and move her to Soy formula to see how that goes? I'm desperate for her to be comfortable.
Blooming heck, can't believe she is asleep!! No fists or snorting or grunting!

I wish I had known this thread was here.

My DD is now 13 weeks and we have been through the mill. At 3 weeks she started screaming at night - every hour to 2. She was a small frequent eater throughout and would never take more than 3oz of expressed (she is EBF). I researched and researched (in a not very good way obviously) and thought she had colic of some kind. I stopped dairy at 6 weeks with a dramatic improvement in her nightime pain but still she was a very frequent small eater - 2 to 3 hours.

Went to HV and was told to increased feeds as weight was on a plateau at 9 weeks. I fed and fed for a week. then things went really wrong. She screamed and screamed and screamed - she stopped nursing completely for a couple of days - during the day - feeding up to hourly at night. She was exhausted and me and DH were nearly dead. Went to GP who asked if I had tried infracol as 'that worked for my daughters'. Finally persuaded him DD needed something more and he gave us gaviscon. Giving gaviscon 6 times a day is not fun. I also went to breast feeding clinic where 3 women - midwife, student MW and play coordinator (?) watched me feed and told me 'push through the screaming... push....push'. It was like giving birth again!

Went back to different GP after that one then said 'if reflux is the only bad thing that happens to you, you should be grateful'. New GP was again v. reluctant to do anything. Told her we had to have ranitidine as we had had gaviscon for 2 weeks and she was still feeding every 2 hours at night and screaming ++++. We are now on our second day of ranitidine and I have everything crossed. It is such hell. Still going with Gaviscon though.

I wish I had know that bubbles, white tongue and sticking out tongue were all symptoms of reflux. From the start DD wanted to be sat up and not to lie down. I feel such a weight of responsibility but why didn't the HV or GP know? We went to GP when she was 4 weeks with the nightime screaming and were sent home and told it would pass. DS has crossed percentiles and they still will not refer to paed.

The last GP I saw asked me if I 'liked being a mother' as I sat there in pieces with chronic lack of sleep, dirty hair, tracksuit bottoms and (OMG!) hairy legs (in fact she didn't see them but still....).

Does anyone have any ideas about how to administer all these meds easier than in syringe?

Sorry for rant but feel this has been such a long journey and reading this thread really helps.

Hello Highjinks
I feel your pain, if it wasn't for this thread I think I would have been committed by now! First time Mum and thought there was some crazy conspiracy between all mums so that they didn't tell you how difficult it is!
It is a bit of a revelation when you discover what the problem is! Happy for you that you might get some relief now. The first day the ranitidine kicks in is very odd as my DD slept very well & soundly nearly all day (obviously needed it) and I was so freaked out I kept checking her every 10 mins. If this happens for you I strongly suggest you go to bed for the entire day. Better still bring your partner and catch up on some 'cuddles' too as I am sure there has not been much time or inclination for such with a refluxy baby.
As for administering ranitidine ask the chemist for a little pipette instead, comes out more gently. Tip babies head back as it will open throat so you don't get that horrible gagging and then squirt into the back side of mouth past the bump in the middle of the Tongue. Hold baby back until you hear a swallow and pop in a dummy to ensure it stays down.
Your journey might not be over yet as we have had to go on to other drugs but at least you know where to read for advice. I think it is Holly on the previous page that lists the treatments her LO's are on, that and google really helped me get a result (for now!)
You really should push your GP for a referral, I don't think they can refuse and in the mean time instruct them on what you would like.
I have to say I have gotten very assertive/protective mummy over this issue and I like the change in me!
Big hugs for the past 13 weeks of pain for you and your LO and disgust at all the insensitive/ill educated medical people you have met on the way.
Good luck & I hope it all works out for you.

Thank you yogamummy - have just tried to find pippettes and now ordered some. Last night she was still feeding 2 hourly - very difficult to feed during the day again today - only 5 mins every couple of hours - is this because she is feeding so much at night? no idea what to do. my brain feels like it has left my body with so little sleep for these last few weeks.

Does anyone have any ideas what to do? I can't seem to work anything out today.

Highjinks, if your LO is anything like mine it is because she is less aware at night so the reflux pain plays a smaller part. The five mins feeding during the day is probably as much to do with comfort as controlling how much goes in the tummy so less to come up.
I'm sure when the ranitidine kicks in this will improve. It will take a while for the pain to subside and little pipes to heal. However, if you don't see a change within the next few days, I would be back to the GP quick smart.
Top tip, if you have an iPad download some movies and watch them in bits to help keep you awake. I was a mess after emergency section and anemia and a non sleeping baby day or night and this was the only thing that helped me through.
Are you co-sleeping? I hated it, but it did help as I just popped my boob out and my LO lay sideways and fed and I kinda snoozed at the same time. I used to also have to sussh very loudly while rubbing my LO's back and feeding at same time.
You will have a lovely relaxed, smiley baby soon.

highjinks sounds like a horrible time you've been having, also you too yogamummy. Sounds like you've both had dsome completely duff advice from the healthcare professionals :(

highjinks Have you seen a qualified lactation consultant at any point? They are really fantastic generally, and might be able to help check for any other problems that might have gone unnoticed and which might contribute to her low weight gain and general unsettled-ness -e.g., tongue tie, oral variations or something else that's impeding her feeding. Re the 5 minute feeding in the day, this can be normal - babies can get quite efficient as they mature: my DS was only feeding for 5 minutes by about 6 weeks of age and my DD never fed for longer than about 5 minutes either, unless she was sucking herrself to sleep.

Small syringe direct into the baby's cheek is the best way of getting ranitidine down. Second the suggestion about putting dummy in immediaitely after. She'll also be less able to spit out the ranitidine if you keep the syringe in her mouth while she swallows. Alternatively, you could mix it with some EBM in a bottle but she might be put off by the peppermint/ alcohol taint in her milk, which is not exactly what you need!

YOu mentioned you'd cut out dairy and it had made a dramatic difference - have you carried on with that? Dairy is hidden in everything and exclusion needs to be complete IME e.g., nothing with whey in it, nothing with skimmed milk powder or any alternative mammalian milks (e.g., goats') in etc etc etc, but you've probably thought of all that. Soy is another common allergen for babies with cow's milk protein problems - often they go together and so it could be worth cutting that out for a while to see if it makes a difference. If you're going to do this long term I would see a dietician to ensure you're getting adequate nutrients yourself.

In the short term, do you have any EBM in the freezer? If so, I would recommend conscripting a relative or friend, getting them round to do a full night duty while you catch up on sleep. Invest in some wax earplugs from boots, ram them in, don't feel guilty and shut yourselves away.

yogamummy sounds like things are picking up for you - that's good.

And finally some good news from our household....DS is now 7 months, and after a horrendous first few months and some sleep training he is now a happy, contented baby albeit with a few ongoing feeding issues but completely easy to parent. And I never thought I would say that a few months ago!

Thanks Narmada - will try some shooting at her cheek and hope for the best.

Feel a bit better today as DD slept for 3 hours in a row! First time in ages and ages - still up from around 4am with pain and discomfort until now so we are still a big jangly.

Yogamummy, how is the losec going? We are on day 4 of rantidine here and DD is still having significant pain. She is chomping on her fist again and bubbling with lots of squeaking, not able to sleep after 4am with pain. We are booked to see GP on Thursday......

Worse thing about all this is we have to look for somewhere to rent as our lease comes to an end at the end of June. Car seat is source of real pain for DD so we are having a break from it now for a few days to give her some relief. So stressful - house hunting + blooming reflux = incredible screaming car!

OUr DS was terrible in the car seat until a couple of months ago highjinks. I think it compresses their stomachs in such a way as to make them vomit.

Oh guys, I can not tell you how much better things are on the Omeprazole/Losec, I sincerely hope it stays like this. Just finished a relatively fuss free feed, she had a little sleep for 5 mins after and is now sitting smiling in her bouncy chair. She is still bubbling and smacking her lips but the major pain seems to be gone.
If I could just get her into a better sleep routine now we would be good. Narmada interested in your sleep training. My LO could stay awake from 7am - 10pm, she is very hard to get over for a proper sleep unless I really work at it. I mean 3/4 hr spent dancing around with her!
Highjinks after 4 days if you have seen no change I would suggest dose needs increased or you need another solution. What dose you on?
My LO is on .6ml 3 times a day from when she weighed 10lbs.

god im so glad to see this discussion. dd is 3 weeks old and is never settled. she feeds all the time is sick all the time, has the white tongue, can anyone tell me why the white tongue? is only settled when on my shoulder, has hiccups most of the time and choking at times, arching back. i went to see gp who told me to try dr browns bottles which i spent £30 on not made a bit of difference. infical not working. going back to see gp tomorrow.
So........ what do i say to made her sit up and take some notice and actually do something for me, and what should i be asking for, do i start with baby gaviscon?
my first daughter who is nearly 2 had reflux and baby gaviscon worked for her but she was no where near as bad a our new baby is. i dont get any sleep as im up all night and day trying to wind her and calm her down. im so worried the gp wont help me.

Hi Tayto I take it you are from N.I? So am I!
My LO was on ranitidine from 4 weeks, GP went straight past Gaviscon as he said it only works in mild cases.
Write down all symptoms/behaviours and document to GP.
Good luck.

hi yogamummy thanks for your reply, im from limerick but live in the uk. im going to take my list with me tomorrow. did ranitidine work for your little one?

Tayto bit of a give away!!
It worked but only for a few days, my LO had piles of stomach fluid coming up and down her throat with silent reflux so needed Losec, which seems to be working better so far. We are only a week on it but I am forever hopeful!!
Just changed her formula today too, hopefully it will help. Started Efamil A.R, she seemed to like it and gobbled the whole bottle down, we have had loads of issues feeding both BFing and FFing.

Scrap the last post! 3 feeds down and I have a grunty wriggler that hasn't slept since 4am. Legs up kicking in pain and wheezy breathing!
My husband reckons perservere!!!! I think he may be mental!
Back to comfort milk today and off down the chemist to order up some Aptamil pepti.

Goodness things seem to change so quickly - DD is now very constipated and has been screaming since 4.15 this morning following a long day of reflux. We are giving Ranitidine 5mls/ 5mg twice daily with 4x IG - up to 6x on some days.

How do you help constipation?

She also started refusing the one bottle of expressed BF when reflux was really bad about 3 weeks ago. We have been trying and trying to offer one to her every day and she refuses. Has a bit of thrush but I am giving her nystatin - its an on going problem and she has taken bottle in the past with it. I am desperate as it means I have to do all the feeds so have no break. DH is also getting frustrated as really wants to help but can no longer do feeds. Any ideas? We have tried different bottles too.

Thanks for all the help too!

yoga if omeprazole at a decent dose isn't working, I would bet my bottom dollar it's the milk that's the problem (or part of it at least).

highjinks sounds awful. I reckon you need to get the thrush cleared up to see if that is the problem or part of it..Nystatin enerally not considered the best treatment for oral thrush - daktarin oral gel is better - it does say it can't be prescribed for babies under 4 months but this is due to a notional risk of choking on the globs of gel if you put too much in. I would ask the doc for this instead. Are you being treated for the thrush? If not you'll keep passing it back and forth to one another. I would also thoroughly boil bottles and any boilable breastpump parts.

Re constipation - have you tried carobel instead of the gaviscon? It's a bit less constipating IME but does the same job.

Hi ladies, oh boy I've had a day from hell! My LO has been so unsettled and crying since 4am. Totally wrecked!
Bad milk!!
I managed to get my hands on some Apatamil Pepti but not sure what I did wrong and it made up very thin so she started to choke when I was feeding her, so she has refused to eat until 1/2 hr ago from 8.30am. I have made up 3 bottles only for her to go nuts and reject them!
I think I will try the pepti again tomorrow when we are a little better slept.

Narmada did you have any issues with the viscosity of Pepti?
Omeprazole dose is 5mg once a day and she is 12lbs, could this be starting to be ineffective? Paediatrician did say we might need to increase to 10mg but that he would see how things went for 2 weeks.