What to do with reflux baby that hates everything!

[milkyjo]

13 week old dd is breastfed, had a posterior tongue tie snip a week ago, is having gaviscon however the reflux remains. She screams a lot like she's in pain from either the reflux or wind. She hates lying down but will also eventually cry when being held upright so she ends up crying herself to sleep as she is exhausted but wake after half an hour. She won't go in a sling, I've tried 3 different ones, she hates the car seat and car, she cries in the pram. She hates lying on her tummy. We have a wedge for playtime, she tolerates a swing for 5 minutes. She will puke about 5 times and then the crying begins. We are waiting for an appointment with paediatrician but it's not until july. I am at my wits end as I can't stand to see her in pain and also it's really affecting ds 2.5 as he gets quite upset when dd cries. She is fine weight wise. Is there anything else I could possibly try or will I just have to wait it out? We are all so miserable, if it wasn't for the fact that ds needs to go to groups I don't think we'd leave the house!

stamp your feet for a pediatric referral and get prescribed omeprazole and domperidone - the ranitidine (if it works) usually only works for a short period of time!
good luck

I have a friend who said her babies reflux disappeared instantly when she fed him formula milk designed to help reflux. I can't get my son to take a bottle though so haven't been able to try it myself.

I really sympathise, my son now 2.8 had what we thought was reflux, it wasn't until he was 6 months (that's 6 months of non- stop screaming and sleepless nights) that he was diagnosed with allergies to cow's milk protein, soy and gluten. At that point I cut dairy, gluten and soy out of my diet one by one (I was breast feeding), and it helped in some respects (eg he had had constant green diarrhoea which improved) but he didn't stop crying until i stopped breast feeding at 9 months and put Ds on neocate formula. He then transformed overnight into a happy baby. He's been fine ever since though still has no gluten dairy or soy in his diet.

In my case the reason it took so long to sort out the problem is that none of the doctors I saw diagnosed it correctly. We were seeing a paediatric surgeon who had snipped ds's tongue tie at 4 weeks, and at a follow up appointment starting treating him with ranitidine and omeprazole for what he thought was reflux. Despite me saying over and over that the crying wasn't stopping and nor was the diarrhoea, he insisted that ds would grow out of it and resisted my getting a second opinion from a gastroenterologist. In the end I just went ahead and saw the gastroenterologist - privately, it was expensive but a life saver. If i hadnt, DS would probably still be screaming. So my advice is to be assertive with your doctors, and see a gastroenterologist if possible so you are confident that your baby is being treated for the right problem. Not sure where you are but we went to great ormond st hospital in London and it was wonderful.

Oh OP, really sympathise as my LO (now almost 10 months) had this really badly too. We were prescribed domperidone and ranitidine eventually after gaviscon made no difference (still kept him on it) and he was MISERABLE. I made a big fuss and got to see a paed consultant who took one look at him, basically swore at how crap our gp had been and put him onto big doses immediately. He finally came off everything end March when he was about 7 months old. It's bloody miserable watching them suffer. It eventually made my milk dry up even though I too went onto Domperidone to help my supply (and odd side effect of it is it can stimulate lactation) as he wasn't comfy lying down to feed so we went onto the Anti Reflux formula which did help and he's still on it now as won't take anything else. I was really upset at the time to not be able to feed past 13 weeks, but he's fine! We do still have vomiting up and he's not great with lumps, but getting there slowly.

I've no new advice really from others but here's what helped us get through some really tough days: We always rubbed his back, not patted after feeding, kept him upright, tilted the basket/cot, did a little bit of tummy massage. We also had cranio sacral therapy too, primarily for a neck lump due to forceps and awful birth, but also for reflux too. I think it helped, but can't be certain! He went in his buzzy chair a lot, as was upright, plus he liked to see. Tummy time was (and is) a disaster and he hated it as I think it was uncomfy for him. He was in a sling a lot and I still like carrying. Sorry, this is very long. Good luck and This too shall pass...honest :)

Go back to the drs everyday until they refer you to an ambulatory clinic, I visited twice, once on the thurs, then on the tues, by weds I'd seem a paed. If that fails, go to an a and e attached to a children's hospital.

There is nothing worse than reflux, in the early weeks (birth to seven weeks) I could have walked out and never come back. She's now 13 weeks and we've had six good weeks, it feels like a lifetime ago it was so bad. Little signs are creeping back in, but she's on 10mg omeprazole, so we do have room to increase.

Dd tummy sleeps, but obviously not great for you, however, instead of precariously propping cot up, we got a piece of mdf cut just under the size of the mattress and placed it under the mattress and on the slats,cost about £15 and we can increase the size of incline using boxes and books under mdf when needed. Big hugs.

I'm another one who cut dairy out of their diet - I actually managed to get away with just cutting out milk, cream and ice cream. It does apparently take about 2 weeks for it to leave your system and make a difference but I did notice a small change within 3 days and if I forgot and ate ice cream ds would be screaming within hours.

Cutting the milk didn't stop the reflux but it did stop the pain/screaming as it appears he was suffering from both types of reflux.

To cope with the reflux, I found it easier to tip ds over laminate/lino flooring whenever possible and kept a wet mop handy at home - much easier than trying to catch it with a cloth and I got slightly less drenched too.

Our hv suggested early weaning at about 19/20 weeks. This was disastrous as I then got covered in orange vomit which stained everything instead of nice and easy bm vom.

you poor thing - you must see a specialist and hope app in july goes well - we see a doctor at portland hospital in london

im a nanny and i look after a 4/5mth baby with severe reflux :(

he is on nexium, the highest dose and has really helped

has 30mins before a feed, twice a day and is a powder mixed with 15ml of water and given in a dummy dispenser here they are fantasic!!!!

but

every feed is a battle - he protests about having a bottle, each feed takes roughly 45mins and gets generally 5 /6oz - sometimes if really lucky then 7 oz

i then spend 45 mins keeping him upright to try and ease pressure on his tummy

he generally then falls asleep on me and i will then transfer into his cot

his cot mattress is raised at at angle and a pillow at the bottom for feet to lie on and towels either side of him

he sleeps on his tummy and this is the ONLY time as a child carer that i recommend this as to lessen the risk of choking, as even in his sleep he will still sometimes be sick

he will sit happily in his baby chair after a sleep and maybe the 30mins before a feed

nappy changing is always done before a feed, unless he poos during a feed, grrrrrrrrrrrr and then is changed very gently on an incline or the bottle he has drank so far comes back up

there is no rhyme or reason to if he keeps a bottle down or if it all comes back up

every feed is different - if he keeps 99% down is a success - some days he keeps all down, some days every feed comes up

it is almost soul destroying to manage a feed and then whosh it all comes back up :(

we moved to 4 hr feeds so even tho he sometimes has less milk throughout the day as misses a feed, his stomach can cope better with longer feeds and seems better in keeping the feeds down, plus less stressful for bubs

he is on a vanilla based formula normally meant for over 1's but has on prescription - think mum said it was £45 per tin , tho i may have misheard but is a lot more expensive then normal baby powder milks

we have started weaning, solids seem to help a bit rather then the slosh of milk iyswim

the family i work for, the mum doesnt work and looks after the 2yr and i am basically there to look after bubs, he is a fulltime job and the mum said she appreciates how lucky she is to be able to afford full time nanny as it is impossible to look after both children, or the just 2yr is ignored/not played with for almost 2 hrs per feed/winding etc

i have cared for a few reflux babies but this bubs is def the wost case i have cared for :( but as i said to mum, he will start to grow out of it by the time he is nearing one, and more so when walking as upright

milkyjo It's def worth cutting out dairy entirely for a month to see if there's any improvement - it's one of the first questions the docs ask so is very handy to know one way or the other.
It's bloody annoying, but if you start tomorrow, you can give the paediatrician more info to work with.

apatchymum I'm pretty certain it's not reflux now, he's a very testy boy and screams as a first resort!

My 3 week old baby has reflux he is on ranitidine and domperidone, that seems to be doing the job, he now winds easily (both ends!) and is rarely sick (hope I'm not tempting fate!) he is a breast fed baby and was 6 weeks premature, I do tend to hold him up right for a while after feeds. He was prescribed his medication whilst still in scbu but waiting until July seems far too long! :-(
Hope you get it sorted soon x

Reflux is awful. I really feel for you. Gaviscon made my ds constipated but didn't help with the reflux so we took him off it. Thickened milk - sma stay down was the only thing that stopped him loosing weight but he was still sicky and miserable.

Eventually after we'd changed doctors he was prescribed ranitidine which made him happier but he was still being sick. after we got referred to a pediatrician he was proscribed omeprazol and domperidone which helped a lot. He was still sick but not as much but was like a different boy because he was so much happier.

He eventually grew out of it when he was just over a year old.

I remember this with DS1. his reflux was like your DS'. I found all advice pointless as nothing helped until I saw the paediatrician.

At one point I considered taking him to A&E (he had thrown up after every feed and had cried continuously for 4 hours) but by some fluke he eventually managed to keep the last feed of the day down.

I didn't include info about formula because OP, you said you were bf. I am including it here for anyone else who is reading this who isn't bf.

Our paediatrician said the formula for reflux rice in it to thicken it so to try the ready mixed stuff first as they don't like baby getting rice before 6 months if it can be avoided. We get the ready mixed formula at costco using an exec membership. The formula alone will have paid for the membership and it slightly cheaper than walmart (which I avoid shopping at for ethicial and sanity reasons) and about 20% cheaper than anywhere else. Thicker formula has helped our baby.

Reflux bub here too, grew out of it mostly at 6mths, pushed GP for script for Omez, he ended up ringing our Paed to discuss thankfully!! also wrap sling, dummy, raised cot, holding upright and lots and lots of LOUd white noise esp womb music when he was little bub for soothing.. Osteo and Bowen therapy helped too.. Car and pram were a nightmare until he was bigger, got front facing seat as soon as possible, and used pushchair as much as possible from birth, as could raise the back a bit... Wish i,d tried a swing tho, might have saved battles with day sleeps (and sitting in chair, with ds asleep on my shoulder, without moving or breathing for hours!!)

my LO had this and my cousim suggested www.cryingoverspiltmilk.co.nZ which I found useful.

it turned out for us that the culprits were dairy, eggs and soy. when I stopped eating them (nb soy flour is in loads of bread) it was like I had a different baby. sunshine!

I stuck with bf and the restricted diet for six months and then moved her onto neocate formula from the doc. she's happy and growing well.

I would say definitely give dairy free a go. After two weeks then eat some and see what happens (green poos and much screaming in our case) which confirmed it.

my first child had this and i sunk into horrendous PN depression.The thing that helped me most was changing from breastfeeding to SMA staydown milk,designed for reflux.She had silent reflux so didnt even vomit much but my god she screamed for about 9 hours solidly a day and the Gp and health visitor just said"some babies just cry alot".
Someone else feeding her helped anyway as I felt totally responsible for it all when she was arching her back and screaming during breastfeeding!!

And also may I just say hang in there.I know how hard it is to see your baby in agony every day.
It will get better.She is 10 now and extremely healthy,but I remember the darkness of those days like it was yesterday.Pure hell.
xx

More sympathy here - DS2 had severe reflux and the first 6 months were hell.
Things that really helped us were cutting dairy and soya (turned out he was milk + soya protein intolerant but the medics were less than no help with this) and getting him onto omeprazole. Other than that it was just time. I say this to encourage you not to put up with the fobbing off because we didn't see massive improvements until he was two, so you need to get a decent management plan in place, in the event that your LO does not outgrow it as promised at 12 weeks/when they sit/when they start solids/when they walk.
The Little Refluxers website is great for advice and support, and I can't recommend this book highly enough.

Also check out the Cows Milk Allergy Support website and their facebook page (where parents are a fount of all dietary knowledge, having seen most of the relevant paed.s and dieticians in the country between them!! They have made me feel sane since I found the group in January. You don't have to have a firm diagnosis to join - as with intolerances you can't get one, other than by the process of elimination).
I've had two refluxers too - the first silent and the second more a carpet-wrecking type! You will survive, but do stamp your feet as loudly and long as you need to in order to a)get the help your baby needs and b)to keep you sane.

Short term;Ranitidine(Zantac)
Dummy
Time out for you.
Consider formula if you need more time out and go the gaviscom route ( which you can get OTC) which is next to imposs to give if breast feeding.

I promise it will pass

Getting the right medication was key to helping our DD. She was screaming and screaming in agony all the time, it was effecting her breast feeding sleeping everything.

Gaviscon did not work for us but Ranitidine did, within a couple of days. It was wonderful that she could be more comfortable, feed properly etc. Didn't stop the sick but stopped the pain. shes 9 months now.

It will get better.

Reflux is the pits. DD had silent reflux (I suspect she still suffers from it but at 15mth I find it difficult to distinguish from over-tiredness/tantrum/teething). Gaviscon worked for DD but it was impossible to administer as she was EBF and refused bottles and formula. Didn't push it any further with the GP as they were so disinterested (wish I had in hindsight).

The only sling she was happy in at 3-4m was a Baby Bjorn (kept her upright and leaning forward slightly, plus she hated facing into me by this age) but I'm guessing you've tried one of these already.

Up until then, I'd have to carry her around tummy down along my forearm (I now have very toned arms :) ) and she would only sleep sitting up, draped face down across my chest in our bed.

Keep going to the groups, it kept me sane when she was feeding constantly, and I hope you find something that works.

Gaviscon is cheaper to prescribe which is why they try it first. Ask for a medication change. dairy and wheat free for a month made no difference to my baby.

Wow thanks for all the replies. Sadly I have tried most of the suggestions regarding positioning, dummies, sling etc. So the things I am focusing on now are my diet and getting meds. Thankfully I can stay sane knowing how many of you have been through it and come out the other side safely! I know I've been through it already with dc1, you'd think I'd be an expert!

I have waited to see the answers before I would comment, because our case is on the extreme end of the scale. But I will let you know as it may be useful.
My LO had very severe reflux, up to 60 times a day. He had a distended tummy, rash, was screaming non-stop and the situation was desperate. We went through all the standard meds very quickly with little result, saw a paed at Portland. He diagnosed milk allergy, but even with me removing every trace of dairy from my diet, the vomiting continued. I then cut out more foods, MEWS first (milk, egg, wheat, soya). Then started noticing that he reacted to more foods, so progressively cut out more. I ended up on a severely restricted diet (ate about 10 foods in total), and he stabilised a bit, but still had mucous in his poo, which indicated gut inflammation.
Finally, we got referred to a paediatric gastroenterologist, who is also an allergy specialist. He recommended switching to a prescription elemental formula (Neocate), and prescribed a couple of antihistamines. We weaned off omeprazole, which, in general, is not a good med for an allergic baby. Vomiting stopped at about 7 months.
Sadly, my LO has eosinophilic disease, which is caused by multiple food protein allergies. We are working with a dietitian, trying to introduce foods very slowly, and it may take up to 10 years for him to grow out of it completely.
As I mention, ours is a very extreme case, and I would not expect your LO to be this severe, but just wanted to share our experience.
We have tried everything that has to do with reflux. Reflux room on Facebook is a community of moms with similar experience that may help. Little refluxers is another forum that is quite good. And Colic Solved is a great book for the "beginners" , which explains a lot of basics

Sounds like my dd. do you wind after every feed, I mean really wind? Because dd took down so much air despite giving her TT snipped - her wind was dreadful. Still is at 18 months (she also has upper lip tie as well). I have to make sure I get the burps out otherwise all hell breaks loose.

Dd and ds have/had silent reflux. Infant gaviscon was crap and I read somewhere it can make things worse. So we got ranitidine which worked for ds but less so for dd. in the end, I stopped dairy and soya and spicy foods etc. had to be careful when weaning too.

The other thing is that she may well be overtired and this can present itself as similar to reflux symptoms. So I had to get them both into regular naps which was hard, especially with dd as I had a 2 year old too.

With the sling, I couldn't put dd in unless she had been winded otherwise she would go mental (pressure on her tummy I suspect). But sometimes it was just that she was so tired, she'd scream for a bit thfn finally sleep. It was how I got her to take a dummy - I had tried so many, but out of desperation, bought a nuk silicon one in the local chemist, stuck it in and hey presto. She will only take that particular type now (and they're only available online or in small chemists annoyingly). So keep trying with the dummy.

Soon you can have her in a pushchair so she's more upright - dd started napping in one from 4 months or so which was a life saver! Worth seeing if that's an option for you? Instead of lie flat.