Reflux - help!!!!

[sausagebear]

My 18 week old baby has been diagnosed with reflux, after weeks and weeks of gp and hv visits - and being told it was nothing/ constant crying was caused by me being anxious!!!!
He has been on Gaviscon for 2 weeks, and is no longer being sick. Spent the day in hospital on Monday and he is now on ranitidine and domperidone (sorry if spelt wrong!!) They seem to help a bit, but he still screams for hours and every feed is a nightmare battle. He has about 1oz then will scream, has a bit more then screams again. I am at the end of my tether - this has gone on for weeks now - every day is a nightmare and I don't know how much more I can take. I do everything you are supposed to do, ie, sitting upright for 30 mins after a feed etc, but he still screams!
Does anyone have any other advice? Please help!!!!!

[upsyandiggle]

i found that the ranitidine only really helped after at least a week of taking it. But then my dd took it for sickness only, she did not cry/stop taking bottles. I did find a bumbo good for sitting her upo after feeds, seemed to help with winding too.

[peggotty]

Give the ranitidine time to work - hang in there. It can take a week or so to kick in. And make sure that you get the dose adjusted as soon as your ds puts on weight -ranitidine is very weight dependant. Reflux is hell, you have my sympathies!

[Psychomum5]

my sympathies here....it is soooo horrid for them going thro this

I have had three refluxer's, one (DD3) was truly truly hard to cope with. she was the worst they had seen at the hospitla she was under in an NT child, and they were very very close to operating on it for her. she was put onto cisapride tho, which in fact was withdrawn from usage when she was 18mths (she was still on it then too...since 3mths), as it wasn;t licenced for use on babies as it is in fact a schizophrenic drug.....anyhoo, I digress.

I found that calpol was good for her at her worst.......along with reflux causing sickness, they also can suffer 'silent reflux' which causes heartburn pain in them....which I am sure you can appreciate from pregnancy is a horrid pain!!!

for babies, this pain must seem like torture, and so they cry......so I used calpol which altho didn;t cure, helped!!

once I learnt about the 'silent reflux' tho, I better understood the pain and so I coped 100% better than I had, as before I used to get very frustrated and thought that the meds made everything worse instead of better.

holding her upright IME never helped either, as the pressure on the belly was worse....(well, if sitting upright IYGWIM). I found the best way was in a sling....whole body was upright, she felt close and snuggled, and often hearing my heartbeat soothed her more.

one tip for sling use.......wear old tops and prepare for smelling of baby sick all day!

[ib]

I agree give the meds time...if they don't work after a week or two there are others you can try so don't despair.

Hang on in there, you've got a diagnosis which is the hardest step, now it WILL get better from here.

And do give him calpol if it gets bad, sometimes they need a break from all that pain!

[sausagebear]

Thank you for all your replies. It's good to know there are people out there who understand what I'm going through. I will give the medicines time to work and will try calpol too!
Thanks again

[nibbs]

sausagebear - reflux is horrible and often overlooked as a serious problem. It sounds like you've had a really really tough few weeks, and I'm not surprised you're at the end of your tether.
Try looking at littlerefluxers.co.uk for more chat and advice - I think it's quite a new website but has lots of members feeling the same as you, and you might find some helpful information there about different medication mixes, different doses and things to try. Have you been referred to a paediatrician for more help?

good luck!

[mummypig]

hi sausagebear, I'm another that has been through this already. I agree that you need to allow at least a week for the ranitidine to work, so I'm keeping my fingers crossed that next week you might see a little breakthrough and your child will calm down.

Even once it is working, you need to keep on top of the doses. The docs will assume everything is okay unless you tell them otherwise, but as far as I'm concerned, if your babe is still screaming then it's not working. Other tell-tale signs are coughs and runny noses (due to the acid getting up to the throat/nose and irritating them). The doses need to go up fairly frequently as they are dependent on your child's weight (just like peggotty said). But if I remember correctly, we only had appointments every few months so I had to call the paeds secretary any time I thought the dose needed an increase.

I know what it's like trying to persuade them that something really is wrong, so well done for persisting and getting to this point. Sometimes keeping a 'reflux diary' helps when you go to the appointments, as it indicates how much you have to put up with. Otherwise I think the health professionals don't really understand how much your baby can scream/how little they sleep/how little they drink each time. I got the quickest response ever when the paediatrician's secretary could hear ds2 screaming in the background - and that was a few seconds of what i had to put up with every day!

The sling really helped my ds2 and it meant I could get on with other stuff around the house too. (I had one where he could go on the front or the back.)

And forget everything that most people want to tell you about feeding babies, refluxers need little and often. So if he can only take in 1 oz each time then go with it, and feed him more frequently. Hopefully in time he will be able to start taking in more.

The other thing is try to get help for yourself. I think I was too proud when ds2 and I were going through it, and I didn't feel happy about leaving him with anyone else because I felt it wasn't fair on them! But the constant screaming really gets on top of you and it helps to have a break. So if anyone offers help, take it!

Thinking of you

[sausagebear]

Thanks for all the advice - I feel much better now, just being able to have a rant on here has helped!!! We are having a good day today, which makes things a whole lot better!!!
What kind of sling do you recommend?
Thanks again

[mummypig]

hi sausagebear, glad you're feeling better at the moment.

I chose a 'Mai Tai' type of sling called a Kozy. It's very basically a rectangle of fabric with long ties at each end and you can tie it round yourself in various ways depending on how old the baby is and how you want them to be carried.

But I know slingwearing is a very individual thing and so what suits one mum and baby won't suit the next one. I did some research on www.thebabywearer.com/ and then hired a couple from Big Mama Slings in the uk to see how I got on with them before committing myself. I really liked the Kozy far more than the other one I'd hired, which was a wrap type.

Incidentally the ones sold in shops and reviewed in mum and baby magazines tend to be the worst designed. The BabyBjorn I'd used for ds1 was awful for my back if I wore it for too long. Also once the babies were a little bigger their legs used to hang down in between my legs which made it tricky to walk around and really didn't help my spd.

[sausagebear]

Thank you - will look into it.

[sausagebear]

Have had a really good day today and yesterday was great from lunchtime onwards, so hopefully the meds are kicking in!!! Thank you all again for the advice, it really helped.

[ib]

Really glad to hear that!

[Stretfordmum]

My son had reflux and colic. The colic lasted for over 4 months which was hard. He cried every night for hours. We found that MAM bottles helped reduce the level of colic (as they are designed to let the air of the bottle and so reduce the amount of air a baby takes in). We also found that infacol worked to some degree. Many people we knew found it worked best giving it about 20 minutes before a feed (although we were never organised enough to do this!). We got infacol on prescription.

The reflux meant that he was sick after nearly every feed. We were told by everyone that the reflux goes when a baby is started to be weaned. Well that was not our experience. It took a lot longer until at least 10 months when the size of the meals he was eating were much more significant (I think he took a while to eat reasonable portion sizes compared to his peers because of the reflux making him feel uncomfortable). We did find that gaviscon worked a bit until he was about 8 months old and used it in every bottle. It didn't stop all of the sickness but helped to reduce it or the volume of it!

We were told to give him milk more often but less of it - which we tried but didn't find it worked (it just meant more sick more often - which I found exhausting to clear up). It was only when I went to a mum and baby group when he was about 10 months old that I realised that all of the other babies had stopped being sick after a feed. I was still carrying around spare changes of clothes for him and me as well as muslins, wipes and plastic bags for cleaning it all up!!! They all had tiny handbags with just a nappy and wipes in it!!

Compared to his peers at 10 months, our son was still being sick lots (we even had to get rid of carpet in his bedroom as it was so badly stained and put in laminate floor as this is so much easier to clean up sick from!!)

More recently we've found that he has a lactose intolerance - which I think made the reflux worse - so he's moved onto SMA LF formula milk. This has made a big difference. He doesn't wake up with tummy pain, his poos are much better (less runny) and he is much better at bringing up wind.

When he was 18 weeks old we really struggled to wind him. We tried over the shoulder, across our knees (him on his tummy) - this generally meant more sick!!, sitting up on knee, rubbing/patting back. I think each baby is different and there is no best way to help bring up wind - just what works for your baby. Try asking other mums for what techniques work for them. One friend told me that you can hear in their chest if they have trapped wind (I was never able to hear it) but she could do this with her baby. A midwife in hospital told me that if a baby has a slightly blue top lip then this was down to trapped wind (this was true for our son as a small baby but less so as he got older).

Things that we learnt to look out for, when he had really bad trapped wind or tummy pain was that he would push away from us when we picked him up. His tummy would stick out firmly. We also learnt to listen out for a certain type of moaning that he did at the beginning of feeling uncomfortable (this preceded the crying) so we started to be able to know that we could try to wind him again (we found over the shoulder was the best way for us).

My sister told me that lying him down on his back and cycling his legs (as if he was riding a bike) can help as it helps move the wind (especially if it is 'trapped' right in the middle of the digestive system). Also just inside where the hipbones are massaging in little circles (also good for constipation) as it helps move things around and starts things working again. She uses these techniques with people who have learning disabilities and have digestive problems. I used these techniques when it was really bad and nothing would seem to settle him so he'd scream crying (sometimes having to do it several times in a night until he become more comfortable).

We also use 'Cotblocks' about £15 from bumptothree.com which are plastic blocks that go under the cot so that it is on a slope. This helps keep the acid down in the tummy and reducing heartbearn. We've had them permentantly under the cotbed since he was 4 months (now 14 months)(Cotblocks are also great for reducing the coughing when a baby has a cold as it stops the mucus from tickling the throat).

Sorry I feel like i've written loads - I suppose I've learnt there are lots of things you can try (some work some don't) but the best thing I found helped is meeting or hearing from other mums who have experienced it. Friends who haven't had a baby with reflux don't seem to always appreciate how tiring and exhausting it is (and often comment on how baby posset is just part of being a baby - until they see the volume and frequency of sickness our son did!!!)

[sausagebear]

Thank you Stretfordmum - will try these different things. Have had another good day today, so think the meds are kicking in!! Will keep you posted!