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Reflux experiences please.!!!! Especially how you got on with medication.

12 replies

pevie · 25/03/2008 20:40

I hope someone can help. We have been through the mill trying to manage my LOs reflux, tried Gaviscon, ranitidine and omeprazole (losec). Nothing has really helped. She has been on and off omeprazole and reflux did seem to abate a little although she was not more settled generally. we began to think that omeprazole was actually making some of her symptoms such as constipation and wind worse. A new paediatrician recently doubled the dose and she has been chronic. He wanted us to try it for 2 weeks but we're a week in and I dont think we can survive. She can be up and down anyway but this seems like too much of a coincidence. Anyone any experiences of this? Also any experience of reflux getting worse over time rather than better.

OP posts:
kittypower · 25/03/2008 21:27

How old is your LO? My DS had really bad reflux and we too have tried everything, Gaviscon, Ranitidine, Motilium etc. We kept going back to the doctor and paediatrician and they changed the dose each time and kept saying there is not much they can do. It is so demoralising and was really upsetting when DS would struggle with every feed and pull off screaming while I was BF. It got to the point where I couldn't really feed him in public as he would just pull off screaming every 20 seconds. Also being puked on all day every day was so tiring and upsetting. For my DS, I don't think any of the medication really helped at all and the different doses didn't change anything. Our big change came when I stopped BF at 6 months and put him on Enfamil AR, which is a formula for reflux babies. I also introduced solids at about 5 months and this helped too. Once he was on solids and Enfamil his reflux stopped really quickly and he is now 7 months and totally fine with no reflux at all - such a massive relief! If you are BF I think you can give something called Carobel which is a thickener just before you feed and I think this works by making the feed thicker and easier to stay down.

columbolover · 25/03/2008 21:30

Hi, don't think I can help but wanted to offer you some support.

My ds had reflux and was treated successfully with ranitidine and gaviscon. Some people find the gaviscon makes their babies constipated.

Maybe your dd needs another medicine, some people swear by cranial osteopathy for babies with reflux but I don't know much about it.

How old is your dd?

I remember being told ds reflux would be better once he was weaned but actually it got worse for a while, despite being on meds, to the point where I now try to avoid some foods as they still make him sick sometimes- such as cheese - even though he is now cured.

Have you tried posting on the health / weaning threads to see if anyone there can help too?

Sorry I can't really help, but I understand how you feel, hope someone comes along with some good advice.

columbolover · 25/03/2008 21:32

great advice KP!

Psychomum5 · 25/03/2008 21:39

three of mine had severe reflux when tiny, and we wnet thro the gauntlet of meds.

we also had cisipride for DD3, which has since been withdrawn because of probs.

nothing TBH worked well for us.......it was more a managing thing and waiting it out reather than meds to curehelp/lessen the severity.

mine were on meds until well past their 1st b/days. I was told it would ease once they sat up....it didn;t. if anything, the sitting put more pressure on their tummies and so made them more projectile.
crawling.....again....no improvement. I could at least find out where they were by following the little trail of sick.

even walking to start with induced more sicky!

I no this doesn;t sound like help, and for that I am sorry, but I was promised for so long that the meds would work, and then when they didn;t there was no reassurance that this in fact can also be quite normal IYGWIM.....i wish that they had been more honest, or that I had had MN to find that it can be quite normal.

meds help some........without then they would be screaming in agony with constant heartburn, but they were in no way a magic cure all. I just had to wait until they grew some and it eased off.

BUT......they are still very very quick to be sick and have very sensitive gag reflexes, so I don;t think it ever goes completely, just as they start walking and there is less pressure, so the tummy manages to regain a little more control again.

pevie · 25/03/2008 21:41

Should have said, my LO now nearly 11 mths so vomiting is not really issue now as is on lots of solids. She did get worse on solids then calmed a little again. TBH has been v.up and down but recently after an illness got much worse. Medication hasnt really helped over time so wondered if any point continuing. She has been bf since outset although recently gave her some ff when at work. have been worried about this as still wonder if a dairy intolerance is part of it, so have been trying to give her soya which she is not keen on. Been to cranial osteopath and chiropractor, both no use really. Am gutted its got so bad but think it may be to do with her having a recent virus as she vomited during this and I think it has made acid worse again, also congestion much worse at night.

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Psychomum5 · 25/03/2008 21:45

oh god, weaning was an utter utter nightmare. I even had to be admitted into hospital with DD3 to help wean her because of the pain she was in, the constipation, the milk issues (which they then discovered was allergy).

soya milk didn;t make any difference with the sickness, but it did ease the congestion and mucous build-up, and also made a huge difference with the runny pooh!

it did get worse again after each virus/illness too.......I just upped the meds for a couple of days to help with the tummy pain and then carried on as normal.

Starshinetiger · 25/03/2008 21:48

Hi Pevie,
Sorry your LO is going through this. My LO did too and nothing helped I'm afraid. Like Kitty we introduced solids at 24 weeks, but it didn't help greatly. What did seem to help was him being on Nutramigen - they gave me this because they said bfing wasn't enough (he was losing weight). I really didn't want to give up bf and I did a home 3-day trial where DH gave him a bottle, while I pumped. After the 3 days on ff, he was so much better and one of my friends pointed out - who was I bfing for, me or him?, so I stopped. It didn't stop the reflux, but it did get better and he was putting on weight which helped. I guess it depends on the baby. We also tried cranial ostepathy - she said he did have some twisting from the womb, so it probably made him more comfortable, but it didn't help reflux. I took him off the meds (ranitidine and motilium/domperidone), as they didn't seem to help. Just the v. regular feeding helped. Some say that dairy intolerance is connected with reflux, so if you are bf, you could try cutting out dairy, but I certainly wouldn't put him straight onto a soya formula (that can have bad effects, unless a GP tells you to do it) - but the formula specially for reflux babies I have heard is good - nutramigen is good for reflux/colicky babies, but it is also hypoallergenic, so is very expensive - we get ours on prescription, as he had signs of a potential intolerance (although they wouldn't test).
Hope that makes sense, sorry for the rambling. It will get better - my DS grew out of it at totally at 8 months, but it improved steadily over that period - I know it feels like the hardest thing ever, not knowing when it will improve, but it will! (Can't believe we're thinking about doing it all over again!!)

Starshinetiger · 25/03/2008 21:51

Pevie - crossed posts with you. mucous can be a sign of dairy intolerance (but I'm no specialist, so don't pay total heed to me). My DS has dairy free diet still, as he has bad eczema - he has water-made porridge or toast for brekkie, meat sandwiches and veggies for lunch and meat or fish with veggies for tea and then just his formula at bed - it is harder having dairy free diet, but doable. Having both a dairy and soya intolerance is quite a common combination I have heard - you could try purchasing a tin of Nutramigen 2 from chemist (about £11 a tin) and just trying for a few days, to see if this helps - if so, see if you can get it or something similar on prescription. Just a thought.

pevie · 25/03/2008 22:07

Starshinetiger, we did get nutramigen and another one on prescription but she wouldnt go near them, would at least try soya which is why am trying that. Think congestion also a sign of reflux though so may just be that. Interesting psychomum 5 that yours got worse after illness because unfortunately we have had 2 really bad vomiting things (one after a fall and one a virus I think) and each time has been nightmarish after that. Week or so ago she vomited on and off for about a week with bad nappies now much better but is nightmarish at night and seems really refluxy again. Have upped meds as advised but worried about wind its giving her!!!!

OP posts:
Psychomum5 · 25/03/2008 22:47

you know what, she may not be getting wind from the meds, she may in fact be suffering with silent reflux (think heartburn like we get during pregnancy), and be over swollowing(sp?) to compensate or relieve the pain IYGWIM.

this in turn will create wind, which uness she burps it up (and then make the pain worse again), it will go down and make her colicky!!

tis one viscious cycle which is so hard on us mums as we can do nothing to help them, but just knowing what it was helped me understand and so comfort them better rather than get irritated and anxious!

ib · 25/03/2008 22:58

I have to say meds really sorted ds, but in combination with a dairy/soy free diet for me (bf). 6 months later we did manage to introduce these back in. Worth a try?

mummypig · 25/03/2008 23:36

hi ds2 had really bad reflux, only went off the meds when he was 2yo, despite many people telling us 'it'll get better when he sits up/starts solids/stands up/[insert your own developmental milestone here].

However, once he went on omeprazole it helped him a lot, so it's a pity your dd is not responding well to it. I think kids can respond differently to the different proton pump inhibitors (of which omeprazole is only one) so maybe it would be worth the docs suggesting another one?

Also is your consultant a general paediatrician or a paediatric gastroenterologist? With ds2 we were only seen by a general paediatrician on the NHS but we decided to pay privately to see a paediatric gastroenterologist. He pretty much agreed with what the general paed had said, to be honest, but we were reassured that if there had been anything else going on he would have picked it up. He did also say that our son was probably in the worst 5% of refluxers which was kind of reassuring in that he acknowledged there was a problem and we weren't making a fuss out of nothing.

We definitely found ds2's reflux was variable and got worse when he was ill.

I agree with the comments about possible intolerances as that's often linked with reflux. You really have to watch out with soya as many kids who are intolerant to cow's milk develop a soya intolerance too (as did my ds1). (Oh, just noticed that starshinetiger said something similar.)

Anyway, as soon as we realised he had a soya intolerance as well as cow's milk, my ds1 just stopped having any formula at all (and he had already weaned off breastmilk). I can't remember exactly how old he was but he was eating loads of solids, so we weren't worried about calorie intake. We found many ways to ensure he had a good calcium intake, like giving him calcium fortified orange juice, rice milk on his cereal, lots of eggs, bread, hoummous, apricots, broccoli and so on. Your dd may be a little young for this but you do say she's eating well, so I just wonder if the soya milk is really necessary? Kids do vary so much though: with ds2 i just kept breastfeeding him as long as possible and expressed enough for carers to feed him from a bottle. And, in contrast to ds1, he took a fair while before he was taking much in the way of solid food, so I wouldn't have felt comfortable reducing his milk intake.

Have you found the PAGER site yet? www.reflux.org/. They have loads of good info and some very experienced volunteers so you could contact them for advice.

Another site I found useful was the MARCI-kids site www.marci-kids.com/, from a US research group looking into PPI meds used on children. There's good stuff about how children metabolise the drugs faster and so they need higher doses per kg than adults would. I seem to remember the info from here also made me decide to give the omeprazole more frequently than the paediatrician had suggested, and it made me aware that the timing of the doses was important too. I think the omeprazole works best if you give it half an hour before food (although I can't locate that info on the site at the moment). They do however seem to promote Zegerid, which I don't think is available in the UK.

Finally there are loads of people with good advice on the infantreflux.org message boards and the Yahoo! breastfeeding reflux group.

Sorry for the long post, just trying to remember stuff that helped us even if our situation wasn't quite the same as yours is. Thinking of you. It's a tough thing to go through.

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