Does anyone here have experience with infant reflux??? Please as I'm struggling

[sheepgomeep]

Not sureif this is the right topic to put it in but here goes.

I would appreciate some advice or experiences regarding infant reflux.

dd2 who is 15 weeks today was 9 pound 8 oz at birth but from day one she has has problems feeding. From birth we would struggle to get milk down her as she would would fuss and whinge but we persevered and she has steadily gained weight and I put it down to her being very colicky.

The last 3 weeks she has got much worse and every single feed has become a nightmare as she goes hysterical at every feed. she will take a few sucks maybe take an ounce before she throws herself off and screams. She draws her knees up when she is being fed and arches her back as if she is in pain.

sometimes she will get 3 oz down her then we have to soothe her, try and get her to sleep then feed the rest of the bottle when she is sleepy! .

She also:

is sick afterwards although admittedly not a lot
Is also a poor sleeper
dribbles loads and also nearly gags herself on her fists
seems to cry most of the time.
her weight gain is slowing a little too.

I am really annoyed with my hv as she has suggested giving her some baby rice or rusk as she thinks she is hungry! I did follow her advice because I thought so too so please don't lynch me or call me ignorant. I have found it has helped giving a few mouthfuls of milky rusk as she then shows more interest in the rest of her bottle. (She only gets this at teatime.)

She didn't mention reflux at all which she bloody should have done. she's been a bloody hv for 15 years and she should have recognised the signs!

I made an appointment with the doctor this morning but could only speak to the nurse which I wasn't happy about but I did end up breaking down as I am very down about my dad and stuff, I still can't believe he's gone.

Anyway she did mentione reflux but said that because she is gaining weight and looks bonny then she couldn't have it that bad! Is that right??

She did give me a short cousre of infant gaviscon and I'm hoping it will work?

Its her sleep thats causing me distress. she never used to be that bad but now its awful. It seems to be everyhour she wakes up and she is so sucky! even on her dummy and she is always rubbing her nose and mouth like its bothering her and I'm sure it wakes her up. I used to swaddle her but now can't as she fights her way out of it. She will sleep on her front better than her back 'I've even tried co sleeping but no luck with that either

How do you cope and will it get better, I feel so down about everything. All I seem to do here is moan lol

Yes my DD had it badly too, it can make you feel very low in itself, constantly washing stuff from a vomitty baby. DD is on lots of meds anyway so people just kept saying it'd settle down etc but after some avoidable hospital stays she is now on gaviscon and ranetidine which have made a HUGE difference.

I'm really sorry you are having such a bad time of it. Ds had really bad reflux (but also not gaining weight). Gaviscon did nothing for him but the other meds worked wonders (he was on omeprazole and metoclopramide).

So don't give up if this doesn't do it, and insist on seeing a GP next time.

Hope it gets better for you.

Sheep - the gaviscon may help but if not there are other meds they can try.

You could also prop up the head of her cot (we put a rolled up blanket under dd's mattress) and keep her upright as much as posible after feeds.

Puttung weight on isn't necessarily an indication of the severity of reflux. She can reflux up into her throat but not actually be sick. The acid still makes it painful and uncomfortable - possibly even more so than if she properly vomited her feed.

You poor thing - yes it does get better!! I assume you're formula feeding? All the breast fed babies in my 'group' went through this screaming and pulling away phase - it lasted a small number of weeks and then just suddenly stopped. No idea why it happens. If you're using a bottle - it may be worth trying a different teat - they have different flows and your baby may be finding yours either too fast or too slow.

Taking your whole story in to account, I would really recommend thinking about taking her to see a cranial osteopath - my DD had severe reflux (vomited entire feeds - 3 out of 5) and she had some tightness in her diaphragm and once that was sorted, her feeding was much more comfortable for her. Also - it helped with her sleeping as she didn't necessarily wake up after each sleep cycle. Everything seemed to calm down.

She may also be going through the first stages of teething - lots of changes take place in the gums and the jaws before the tteth actually appear and my DD also was behaving exactly like yours from about 10 weeks I think. Some babies are born with teeth too, so there are no strict rules for when the discomfort appears! Have you tried giving her a dose of calpol and seeing if that has any effect? If it does, it might imply that she was in some discomfort. She may also have a tickly nose - their sinuses are so small that they tend to get snot stuck up there and they don't know how to blow their nose etc.... or it could be a combination of things. Again - she may have some restrictions within her skull / face that's causing her discomfort and interfering with her ability to suck and a cranial osteo should be able to help with that. Really.

Please please do think about not giving her the solid food - her digestive system is not mature enough and you could inadvertently be leading her down the path to Crohns etc. My understanding is that solid food too early results in food being trapped in odd shaped pockets that line the gut and then the pockets close as the gut matures and food that's got caught goes rotten and everything ulcerates.... please do think about it and do some reading.

Thanks for your replies

The nurse also asked if I'd tried calpol. Well yes I had and I said it dosen't work and she said well she can't be in any pain then. But the medicine is coming back up and out so it wouldn't have chance to work then would it I don't think.

I was told by the nurse that they don't prescribe anything else but infant gaviscon. Honesltly, I must try and see the doctor next time

are cranial osteopaths expensive?

I also forgot to mention she was an emergency caesarian

sorry that sounded sarcastic put thatinyourpipeandsmokeit I*'m typing in the dark here, trying not to wake sleeping baby

My dd had reflux until she was about 6 months and it stopped as quickly as it started. We used infant gaviscon plus tried a formula called carobel which thickens in their tummy so doesn't come back up as easily (possibly why the rusk is helping?) We also kept her propped up after feeds.
My dd always gained weight despite the constant vomiting so weight gain not always an indication of how bad/uncomfortable it is for the baby imo.
My health visitor was totally useless too, got more helpful and accurate advice off here. It really does get better and I'm sure once you have cracked what works for you and your dd things will get easier. By the time my dd's reflux stopped it barely registered as a problem really, just another of her little ways if you know what i mean?!

hanks too many shoes, I'm guessing thats why the rusk is helping too. she doesn't have that much and I make it really sloppy too,

I als put her on her front too sleep tonight and propped her cot up too, so fingers crossed

sorry to hear your problems, and really there are a few. my baby had severe reflux and vommitted all feeds up all of the time, so always soaked in puke (me and him), explosive nappies and wind. he would squirm all the time as if he was in pain, i reached a point where doctors remedies worked but only short term and became very down about it. a friend said to try cranial osteopathy which we did (4 x) and it really worked. baby was completely calm during the session and the sickiness and distressed baby got less and less over the weeks. I WOULD TRY IT IF I WERE YOU. it cost £35.00 per session, not cheap but i spent his child benefit and maternity pay on it.
with regards to the lack of sleep (baby), this could be because baby is hungry if being sick, or very uncomfortable. put the cot up like we had to on about 3 telephone directory thickness books. it looks steep but it needs to be to keep the acid down. i was only using one and the paediatrician said it wasn't steep enough! also, a dummy helps as saliva is produced it neutralizes the acid in the gullet. if breast feeding, watch what YOU eat because things that cause us acid MAY pass on to baby (not sure about that myself tho). but my life saver was infant formula from the doctors called ENFAMIL. it is pre-thickened (looks horrible in the bottle) but it stayed down. or use the formula you want (any) and get a prescription for a thickener from cow and gate called 'CAROBEL INSTANT', its excellant stuff. any questions then i'm here.

I saw a child just like yours on one of those nanny programes.

As we all know when we have indigestion or heartburn then lying down makes it worse because it's easier for the acid to move up from your stomach.

So she did 2 things that really seem to make a complete difference. Firstly she invested in a special bottle feeder...I'm sorry but I can't remember it's name but the principal is that a normal bottle just "pours" the milk into the baby and wind is gulped in as well. This bottle makes the baby drink slower, suck harder and less air is taken in causing less colic, wind, reflux problems.

The next thing was to keep the child slightly propped up at all times limit the amount of time a baby is lying flat. She even had a special slanted mattress that kept a child at an angle rather than flat.

Certainly well worth a try.

"It seems to be everyhour she wakes up and she is so sucky! even on her dummy and she is always rubbing her nose and mouth like its bothering her and I'm sure it wakes her up. I used to swaddle her but now can't as she fights her way out of it. She will sleep on her front better than her back 'I've even tried co sleeping but no luck with that either "

This part of your post makes it seem as though there may be something else wrong - possibly allergy? Please see a doctor asap. Don't mess about with HVs and nurses. No offence to those in the professions.

My ds was diagnosed with reflux at 12 weeks, similar to your dd he was screaming when I tried to feed him, slow weight gain etc. He was also quite snuffly during the night. This all became much better, i.e. disappeared, when he started gaviscon and ranitidine, prescribed by GP.

The screaming was apparently due to inflammation of his gullet from all the vomiting after each feed, though not huge amount and H/V kept saying he was just sicky

Sounds like you've been given rubbish advice by your nurse / h.v. (not that I'm knocking them, I'm a nurse myself!). Calpol didn't work for my ds either but I think that's because its not an antacid!

Ds also does the fist in mouth thing, but I think all babies do that, teething / hunger maybe.

Get to your GP pronto, say you're not leaving without an antacid medicine for dd!

my hv also said m ds didnt have reflux as he was not losing weight, (but he wasnt gaining weight either genius) gaviscon did nothing but hes now on enfamil infant formula and hes much better!

he was exactly the same as your dd, loads of feeding problems when small, fussing and screaming, at 5 months he would only take aroudn 2-3 oz per bottle! i wasnt having any more! i insisted on something and they said 'oh well we'll do it but we're not appy and dont think it will make a difference' within 24hrs ds was drinking 6oz in one go. and now he no longer brings up whole milk feeds he only possets now which is great!

good luck and mention enfamil (they probably wont know what it is tho) as it doesnt have the extra dose of sodium that gaviscon has got!

DS2 has reflux of the acid kind as opposed to the throwing up entire bottle after feeding kind.

As I understand it gaviscon thickens milk help prevent the baby being sick. If you don't have a sicky baby then it wont help. You need to go back and get proper anti-acid medicine. DS2 started on Ranitidine and Domperidone and has now moved onto Omeperazole.

You definitely need to raise the end of the cot with either cot blocks or some books.

I found that I could get DS2 off to sleep and then the second you put him down on the matress he woke up. In the end I used to put him down on his side curled up with his knees up and with a blanket rolled up behind him (I know that you're not supposed to do this but it was the only way I could get him to sleep).

I don't want to be alarmist but DS2 was only diagnosed when he stopped breathing and had two stints in hospital (acid can burn the windpipe and make it narrow). Since then we have had a sleepsense monitor which is why I was confident sleeping him on his side.

On a positive note - within 24 hours of taking ranitidine he was a completely different child.

I now look back at the photos prior to 7weeks old (when he stopped breathing) and his face actually looks different as it was constantly screwed up and in pain. When he started taking the medicine his face relaxed - it really upsets me when I look back at them to know he was in pain and I didn't realise.

Sheep - I could have been reading about my own son! He was hysterical when feeding and we used to feed him 3ozs instead of 6ozs because we would feed him the rest when he slept.

Because he was gaining weight (only because I fed him up to 12 times a day at 17 weeks old and had no sleep myself) the doctors weren't that bothered but it was a living hell for me and this was baby number 2.

He was put on gaviscon which didn't work and I was referred to a paediatrician who was amazing and lovely. My son hadn't fed for 3 hours and sicked up clear liquid with white bits in on the consultant.

He didn't like pumping young babies full of drugs so instead gave us a formula that we got on prescription, it was Enfamil AR. There is something very similar on the market, I think it is SMA staydown and it has rice starch in it that thickens on contact with stomach acid so he could have a normal flow teat (we had tried the thicker formulas) You can tell which one it is because it has to be mixed with cold water and then heated if required.

My son was on that for 1 year, and he did still sick up a bit but for us the feeding became a dream and I cried the day he finally could take a full 6oz feed. He was no longer in pain and became a changed baby.

I did use a sling to carry him around and we used cot props to keep his cot elevated

cot blocks

oh and both my boys (ds1 had a milder reflux) never slept on their backs they both slept on their fronts

Just been trying to find SMA staydown but found a website that has really good info on reflux,

here

if the gaviscon doesn't work then ask to be referred, we wrote a list of all the stuff going on - just like yours above so that they had a full picture. We went private for speed, it cost £200 but we were covered by health insurance. The consultant then requested that we get the formula on prescription and our GP agreed.

To be honest, I let my son sleep upright on me or elevated head wise till he was 1 year old, but at night he slept in the cot. I was happy to do this, I am a SAHM but it was hard. Sitting on a sofa for several hours a day not being able to do anything is really boring, honestly!

Sorry if I am repeating anything, haven't read all posts, but thought I'd share my story.

DD2 is now 5 months old, but started showing symptoms of reflux at a very young age - screeching when feeding, very upset, stiff body, hard tummy, not feeding all of bottle etc. Fed him on SMA which my DS1 thrived on. Went back and forth to doctors, gave gaviscon, nothing worked. Just thought DS2 was a really miserable baby UNTIL I changed his milk to Cow & Gate. IT WORKED WONDERS.

I'm not moaning about SMA nor am I plugging Cow & Gate, but if you are formula feeding, try and change your DC's milk. I wished that I'd done it sooner and feel very guilty for those weeks that I put DS2 through the mill. It really changed him - really happy, placid and enjoys his milk now!

Whoops - don't have a DD at all, mean to type DS2

Hi, dont worry, you sound very similar to me a few months back! All i can do is tell you how it was for my ds. He was 51b7 when born. Had the same thing with knees going up, arching back and he was always sick right from the start. (quite ofter projectile). I was lucky with my HV, she thought he maybe had reflux and to see gp. It was confirmed and he had two sachets of gaviscon per bottle which improved things. He was still sick a lot but gp was never concerned as he put on weight as he should (and some??). He is now seven months and is stil having two sachets of gaviscon(for now, try ebery so often only 1 but will be a bit too sicky). As he has got older he has been pain free (he had pain like indigestion bless him). No problem now really, just a bit of extra washing,. Bare with it as it usually goes around 8 months.

Just to say I did try the different formulas from omneo comfort to aptilmil etc and nothing worked for ds2.

Ds1 grew out of his reflux when he was cruising so around 8 months and was totally out of it when he could walk at 1 year, but ds2 was on prescription formula till he was almost 14 months.

They may suggest early weaning to you, I tried and it at 17 weeks and it didn't make any difference -the belief being that if they have food in their stomach it is less likely to come up as easily as milk or any other fluid, so I stopped and restarted it when ds2 was 6 months.

Thanks for all your replies and the links. I'm definetely going back to the doctors, the gaviscon has worked a bit but she is still fighting the bottles

I have early weaned yes and I have found it has helped a little but not much, but i weaned for a different reason.. my hv put her problems down to her being hungry if she was that hungry then she would be draining 8 to 9 oz bottles ds was a very hungry babies and he was fine.

I only give her a few spoonfuls of runny baby rice (was rusk but wasn't happy with that) once a day.

I am so relieved to hear that i'm not the only one with a refluxy baby, I just wish I'd known or put two and two together earlier

ds1 had reflux according to the HV, it actually turned out to be a milk intolerance, he was in pain because i was giving him something his body couldn't cope with.

hi sheep my ds2 had severe reflux and only got off the drugs at age 2. Gaviscon doesn't work if it is a severe case.

I would suggest going back to the GPs and pestering them like mad for a referral to a paediatrician - a paediatric gastroenterologist if at all possible but if not, at least a paediatrician with an interest in reflux. The drugs they use aren't licensed for use on infants so GPs will be wary of prescribing them (to say the least) and also GPs just don't have the right experience - it helps to see a medic who is seeing this kind of thing every day and then they can really assess where your child is on that spectrum. We were lucky to have a paed with an interest in reflux in our local NHS hosp but even so we had to keep badgering and badgering every time ds2 got worse again.

That link someone else gave is to a private paediatric gastroenterologist and he is a very kind and reasonable man, so might be worth trying if you have the money and have no success on the NHS.

Specialists will also be able to advise on the right kind of milk. Severe reflux is often linked to a reaction to the proteins in cow's milk, so sometimes 'pre-digested' or 'elemental' formulas can help, like Nutramigen Neocate.

some other good links
www.reflux.org/ - the PAGER organisation, based in the states. loads and loads of info, plus they have a scheme where you can be put in contact with a volunteer who's had a child with reflux themselves. it really helps when you feel no-one else understands what you're going through

infantreflux.org forums There's some good help and advice on these

www.pollywogbaby.com/ This site has a great e-book covering all aspects of refluxing babies. There are good sections on ?lifestyle? changes, which can help a lot, and also simple explanations of how the main medications work.

www.marci-kids.com/dosing.html PPI (proton pump inhibitor) dosing information - probably not useful at this stage but may be later on if you get prescribed ranitidine and then it stops working.

www.infantrefluxdisease.com/ Again lots of info, although unfortunately the site is covered in ads. But I would recommend it for this page infantrefluxdisease.com/seriously.php, which discusses getting your doctor to take you seriously.

it makes me so that the healthcare professionals don't appear to take reflux seriously and we really have to fight to get it treated, there must be so many of us around who have such a terrible time dealing with our children with very little support. It makes me think when my kids are older I might set up a reflux charity in the UK. But I don't have the energy right now...

Insist on seeing a doctor and do not be fobbed off with "it's just a phase" and such like. Also, IMO, don't keep changing formula etc. It sounds like reflux and while a change in formula may help, it might not. My ds had reflux from around 4 weeks. He was perscribed Zantac (or something like that) which was an antacid. Worked a treat. Took a few days to work, and then seemed to calm him down. Also fed him as upright as possible. (Tricky when breast feeding) and put him down in a slightly elevated cot (books under the end of one side of the cot). As I recall, we did this until he was about 5 months, and then he had developed the flap that keeps the acid in the stomach (Think that's what it is). If your GP can't help, then ask to be referred. Tell them exactly how down you are and how miserable your baby is. Do not be brave and stoical! Good luck!