Reflux support thread

[SaraBas]

Why is there reflux support thread??

IS it that those of us that have babies with reflux are too busy cleaning up sick, watching for choking, sterilising syringes, measuring out drugs, permanently at the pharmacy or doctors, washing cot sheets, trying to soothe screaming babies????

Reflux is hell and i'm sure i can't be the only one struggling!

MN was one of the first places I turned to see how others were doing and for practical advice from normal people. But it is quite thin and patchy.

Stories please. (mine will follow when get i the chance)

I obviously meant Why is there NO reflux support thread (rushing as per usual)

I am thankfully just at the other end of this nightmare.. DS3 is now 2.5 years old and has in the last 8 weeks only been sick twice and stopped all his medication 9 weeks ago! LET THERE BE LIGHT!

Thanks wonka and congratulations, I'm longing for the day but it can be tough to keep that in mind.

Just think that its tough and if we could all pool are experiences and knowledge it may help others.

Anyone else?

Great idea. DS is 5 months and getting better, but his reflux was never THAT bad (bad enough). Gaviscon is working well.

My main thing is being jealous watching people feed their babies while out and about and then just being able to put them down/play with them/fling them about without fear of being covered in puke.

I also spent a LOT of time online looking for people who might say "oh mine grew out of it at 3/4/5 months" - just so I could have a ray of hope! Instead of the much more common 1 year-and-it'll-improve advice

There are just so many issues surrounding a reflux baby, I think it would be lovely to have a permanently open thread that people can turn to quickly.

For example (thanks mistressploppy)
Gaviscon. In the early days it causes stress. In the milk for bottlefed babies, but how much. when etc.
For breastfed babies how?, when?
how much? how to give it syringe vs spoon?

Then does it cause constipation?

It is very distressing that you can't put your baby down straight after feeds to play or sleep.
Making the cot higher at the head end, changing matt with a pillow under the head end.
tummy time?
How will baby learn to roll, sit up etc

We have lots to discuss.

Yesss - gaviscon is a mixed blessing. I'm exclusively BFing so it goes in beforehand (against the label advice - but checked with medical mates ie GPs etc and said it was fine). DS drinks it just fine, because he's hungry! Never could get it in after a feed. Some people have success giving it in between boobs, ie halfway through a feed.

I give it in a bottle. I also make doses up in advance (whole day's worth, in the fridge) also against advice but see above! I've never increased the dose when DS got over 10lbs (when they can have double) and it still seems to work ok, so do fiddle with the amount you need.

Constipation - was a real problem but resolved itself. DSs poos are still like playdoh but he doesn't seem to care. They are smelly but really easy to clean up! I did make the Gaviscon with extra water for a while but it didn't really make any difference and I worried about it filling him up too much.

He's doing ok with the motor milestones but his reflux is not really bad enough now to impact them. Still finds tummy time a challenge though - we have to wash the mat a LOT!

What about play group when your baby is happily sicking ujp on the toys or the comments about don't you ever give him time without the bib... Not being able to hand them to anybody without warning them he will be sick..
Domperidone and gaviscon didn't ever really stop him being sick and he's trailed along the 0.4 percentile.

You guys rock.

Was given Domperidone for my DD last week after ending up in A&E twice as not feeding and getting dry, taking 45 mins to feed her and great stress. She was in so much discomfort.

Domperidone seemed to make things worse, but was really pleased when they prescribed it as thought it would help with constipation. But alas still rabbit poos.

Yes, I think a reflux support thread is long overdue. My DS is past the worst of it now (15mths) but still brings up a bit of formula sometimes. He still has formula too as his sleep was disrupted when I changed him over to cows milk. Have any of you found the reflux seems to be linkes to dairy i.e. if breastfeeding you can try not eating any to see if the reflux improves.

GPs are often reluctant to prescribe anything else because nothing else is actually tested/licensed for little babies. But a paediatrician will know more - INSIST on being referred to the paeds.

I also found that GPs are not interested unless the baby is not gaining weight - never mind if he's in pain/life is unbearable! The paed will probably be more use

Could not agree with you more mistressploppy.

I have the same problems with gaviscon, really smelly farts, and ?tummy ache and still really bad constipation.

My DD was born at 34 weeks and her reflux was diagnosed as choking and stopping breathing. Also looked in a lot of pain when feeding. She was on 8 feeds a day. As soon as we gave gaviscon she went down to 6 feeds a day and the choking slightly improved.

Still not a fan though.
We have experimented and now give half does to try to get her poos ok. Not really helping though.

DD's reflux is getting worse not better. Now on omeprazole.
Got prescription from GP on tuesday, took to pharmacy wed, script written wrongly, called doctor, agreed pharmacist can sort out.
pharmacist phoned supplier can not get any until next tuesday, we are due to run out tomorrow. IM IN FOR A MISERABLE WEEKEND with a baby that will be thrashing around, not feeding but hungrgy and i'm not looking forward to it.

(rant over)

Poor you and poor DD, Yellowbutterfly

For what it's worth, DS got a bit worse and then MUCH better after a few weeks. I will cross fingers, toes and eyes for your weekend

We've had a nightmare with acid reflux as well. Mumsnet was a godsend for me - a few very lovely and very helpful MNers pointed me in the right direction and gave plenty of good advice.
DS finally got diagnosed at about 11 weeks, after 5 weeks of screaming hell, choking, stopping breathing, etc. He's been on omeprazole since and we are currently trying to wean him off, on advice of the paed. He is 7.5 months old and he is definitely sick much less since sitting unsupported. We will see in a couple of days time how his acid is.
Fingers crossed!

On the gaviscon, I found my son had side effects as well as benefits so paediatrician told me to play with the dose. I think I ended up only using a quarter sachet per 7oz bottle.

we are hitting 6 months on monday and the reflux is...well the pain side of it is so much better but the puking is still a problem. well, it isn't really, we are just so used to it, but I nkow what you mean about puking all over the toys and playmat at playgroups!!! I always have kitchen roll with me wherever I am and people who know us are really good about it.

We have indirectly left my breastmilk all over trains, shops, restaurants etc...!

My little girl is below the 0.4 centile and we are just about to start baby led weaning so am looking forward to multi coloured puke :-)

Hello, just thought I'd pop a post on here to say we are beginning to wean off the gaviscon! Dropping the dose a little at a time, still a bit of sick here and there but pretty much the same as ON gaviscon, so I think we can ditch it soon...

DS is a few days off the 6mo mark - the end is in sight!

My 9 wk old baby was diagnosed with reflux at 3 weeks - gaviscon prescribed and was working really well - projectile vomiting became a rare occurence and although still difficult to feed she did not seem in pain. However, in the last couple of days I feel we have taken 10 steps backwards - so much sick this morning it dripped through the moses basket. And she cries for food and is obviously hungry, but when i try to feed her (bottle) she screams and screams.

I have resisted increasing the gaviscon to a whole sachet (2 of the half sachets) as she already suffers with constipation but should I bite the bullet and increase the dose? she is 10.5 lb. Imake up bottles of 150ml but I am lucky if she drinks 100ml. have any of you increased the gaviscon dose and has it improved the reflux but worsened the side effects?

really struggling with an unconsolable baby - find it very upsetting seeing her sick so much and crying with being uncomfortable. not to mention feeling sad about not being able to be relaxed when we are out and she needs feeding - the puking and screaming in public would be enough to push me over the edge!

please tell remind me she will be ok and any advice re gaviscon would be appreciated. I just want to enjoy my baby!

ok, feel a bit better now having got that all off my chest! sorry for rant

my dr gave me thick and easy to add to ds2 formula. worked straight away, hasnt been sick at all. he was on it for 2 months, we took him off it 2 weeks ago to see how he did and its been fine, one little incident but otherwise he's ok.

Great thread.

When I go out I take a change of top for me as well as the baby - and loads of muslin cloths.

I'll never forget the time my baby projectile vomited over the BBQ grill - adding a different type of sauce to all the sausages. I was so embarrassed.

What a great thread!
i have two boys, both have reflux. DS1 9now nearly 3) had severe silent reflux (i.e. not sick but stomach contents rise up oesophagus and burn it without actually being sick all the time) and was not diagnosed until 8 months, up until then we;d been told everything from "he just doesn't like milk" to "you are over anxious first time aprents! He used to struggle to drink any quality of milk and was on the 9th centile and not really gaining weight. The main problem was that his sleep was so disturbed, he neever seemd to get into a deep sleep so would wake every half an hour or so at the end of a sleep cycle and would stir at the slightlest noise, even at 8 months! We eventually saw a paed at 8 months (tried gaviscon when he was much younger but gave up for all of the previously mentionned reasons and it didn't really work). The paed was great and put him back on gaviscon (low dose) and also prescribed domperidone and omeprazole. These meds wer AMAZING, within a week he would down 7oz bottles and started sleeping through the night and enjoying his food. It was a revelation! He stayed on the meds until he was 2 when we evetually stopped them, he is now fine. I can't say enough how good those meds were, but they do need to be appropriate for their weight.

DS2, now 10 weeks also appears to have reflux, he is much more sicky than DS1 and although he is generally more content than DS1 ever was, he still struggles to drink any real volume of milk and makes weird choking, gagging noises when lying down. We tried gaviscon but it seemed to make the pain 10 times worse and constipated him. Last week he was prescribed ranitidine by the GP which we have to give 3x a day (it taste awful). It has stopped him from screaming so much when feeding and he fusses less and he is generally much more settled, bUT he still only drinks 3 oz feeds (had to stop bf as had mastitis 3 times in 5 weeks, prob due to him not emptying boob properly as not feeding well). Its all a bit of a mare, not really sure he is bad enough for the meds Ds1 had but also not really wanting him to have such tiny feeds as it means he wakes twice in the night! He does have enough to gain weight though, buts thats out of my own perseverence with feeding him every 3 hours and taking 45 min to an hour to feed during the day!!

I wish this thread had been here some months ago when I realised my ds had reflux... I feel guilty now reporting that we're at the 'light at the end of the tunnel' stage because I remember thinking I would never see the day. He was on the 95th centile from birth, so nobody would take my concerns seriously. Projectile vomitting at 6 weeks old, thought it might have been pyloric stenosis, but after a brief spell on the children's ward was told it was 'just' reflux. From that point it was as if we had to go through a very long and very dark tunnel... I can remember the frustration of never feeling I could put him down anywhere. I was washing four loads of washing per day, and was so exhausted and so stressed. Exclusive breastfeeding so it was so dis-heartening when he was sick in such vast quantities only to feed again - I was so exhausted because he just seemed to feed constantly! He continued to put on weight along the 95th centile despite being so so sick which I can only attribute to his hourly to two hourly feeding up until 6 months of age. I was hoping that it would all just magically disappear at 6 months when he started weaning, but obviously it didn't and if anything got worse. We persisted with BLW, and more and more washing. Finally as his weight declined slightly he was prescribed Gaviscon, which seemed to do nothing. Had a consultant appointment when he was 9 months old but told he couldn't have any other medication as he was basically healthy just sick a lot. It is only in the last three weeks that I've been able to put down the muslin, and he has gone for stretches of longer than a day without actually being sick - he's 13 months now. I cannot believe how hard I have found it. HV thought I had PND and referred me for counselling, but I honestly think it was just the practicalities of dealing with the reflux. I really do hope that those of you struggling with this condition are getting the support and help from the medical professionals and not being fobbed off. Parents with babies without reflux honestly have no idea what life is like living with reflux. Although they may be sympathetic, they really don't understand the impact on your whole family and your mental health. There is light at the end of the tunnel though, and whether its after a few months or after 12 months or longer, the day will come when the memory of reflux starts to fade - I promise!

Wow science teacher and happynappies what amazing posts...

So much of what you both have written has resonated with me.

I too often have to feed 2 hourly and it such hard work isn't it and as you say - as they baby gains weight gp's and mw's are not very interested.

Hello, I am from Turkey. I have just joined mumsnet.

We have just started using Gaviscon. We used one at night time ana one in the morning after breastfeeding. But my 3-months-old babj started cry after each dose. Refux stopped but he lived his worst day since he was born. All the day he was very uncomfortable and cryed easily. ofcourse I decided not to give the medicine any more. Does anybody have an experience about that?
I need some advice.