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What to do with reflux baby that hates everything!

(56 Posts)
milkyjo Fri 21-Jun-13 13:06:57

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!

milkyjo Thu 11-Jul-13 23:25:33

Thanks for all the advice. Dairy, soya, caffeine, citrus fruit and spicy food elimination didn't work and saw absolutely no difference from stopping them, then restarting them a month later. The reflux got really bad when she reached 3 months and now at 4 months we have been prescribed omeprazole. Yet to try it as we're waiting for it to be ordered by pharmacy. It didn't stop ds vomiting but did help with the pain. He was on it by 5 weeks though.

MrsMannie Thu 11-Jul-13 10:29:16

Just a quick post as most has already been said. DS is now 12 weeks, having been diagnosed with GORD at 7 weeks. He is on omeprazole and domperidone which has definitely got his pain under control. Ten days ago we had a major breakthrough when having bought just about every useless reflux aid under the sun with no effect, we bought a Poco baby hammock. The first night we tried it he actually fell asleep in it without needing a two hour pram journey! He now already goes to bed happily at 7.30 and doesn't wake until about 1 am for a feed, then miracle or miracles, will go back in his hammock until about 5 am. We have gone from DH on the sofa and me sitting up all night holding DS to having our evenings back and SLEEPING in the same bed. Won't work for all I'm sure but at £160 and lasts until 9 months, if you get just a few hours sleep, I think you would agree its worth it! Got mine from Kiddicare for next day delivery but they also have their own website.

Athrawes Mon 24-Jun-13 04:47:09

A bit of a sideways look at it from me: my DS had silent reflux so we did all of the above but really it only improved at around 9 months when solids came in quantity.
So - what will help YOU...respite care/day care once or twice a week. Getting a decent night sleep once a week or a half day to lie on the sofa, could give you the mental energy and werewithall to sustain for the next couple of months.

Sunnysummer Mon 24-Jun-13 02:10:24

We're still working on it... So far omeprazole hasn't done much, and we're at the highest possible dose a paed can give, so are waiting on an appt with the gastro paed (the waiting lists are so epic that he'll hopefully be recovered before we actually get to see someone in NOVEMBER!)

What has worked so far: napping in the ergo sling (he did object at the beginning, so it's worth sticking with it), sleeping with him on my chest, secured with a moby wrap (not as safe as a separate bassinet, but a whole lot safer than a mother who has slept 1 hour a night), keeping upright with absolutely no jiggling or playing after a feed, using wedges below the change table, the activity gym etc; resting upright in the baby bjorn bouncer inbetween sling carries. Public transport everywhere because the car and pram were completely useless.

We also tried a month of total dairy and soy exclusion and 2 weeks of having him on the elecare hydrolysed formula (prescription only, total allergen-free), but neither worked so we are finally back to breastfeeding which is much better, it is more easily digested, so less likely to cause painful gas and/or constipation, plus he finds it more soothing when he gets upset. If you are going fully dairy and soy free, be careful of things like bread and even sweets - but the goo news is that many brands of potato crisps are ok, as is Lindt 75% cocoa chocolate! smile

Iwaswatchingthat Sun 23-Jun-13 21:57:58

Not much else to offer - you have had some excellent advice here. Just did not want to read and run. Wish I had known about mumsnet when dd2 had reflux. Awful time - she was on the gaviscon until she was three and a half years old. only diagnosed at six months - until then i received the classic health visitor's advice of "babies cry"!!!! it is terrible when you feel you can't make your baby happy and I often felt like I did not even like her as all she did was cry!

Dummy is a good tip - wish we had used one sooner. We waited until she was two and it really helped.

Good luck and keep asking for help. X

CreatureRetorts Sun 23-Jun-13 21:46:25

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.

Merinda Sun 23-Jun-13 21:35:49

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

milkyjo Sun 23-Jun-13 20:53:04

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!

Wheresthepopcornagain Sun 23-Jun-13 20:18:01

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.

pickledlily Sun 23-Jun-13 20:12:41

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 smile ) 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.

hairclipcloe Sat 22-Jun-13 22:30:27

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.

Herhonesty Sat 22-Jun-13 21:50:47

Short term;Ranitidine(Zantac)
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

SurvivalOfTheUnfittest Sat 22-Jun-13 21:25:30

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.

Bakingtins Sat 22-Jun-13 19:47:56

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.

ellasmum1 Sat 22-Jun-13 19:12:28

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.

ellasmum1 Sat 22-Jun-13 19:08:00

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!!

londonlivvy Sat 22-Jun-13 14:08:06

my LO had this and my cousim suggested 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.

CabbageHead Sat 22-Jun-13 13:54:37

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!!)

Want2bSupermum Sat 22-Jun-13 12:38:29

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.

childof79 Sat 22-Jun-13 11:51:01

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.

Sarahplane Fri 21-Jun-13 20:55:12

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.

Beginningofthejourney Fri 21-Jun-13 20:54:42

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

Wylye Fri 21-Jun-13 20:51:44

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!

Blondeshavemorefun Fri 21-Jun-13 20:33:24

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 sad

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!!!!


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 sad

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 shock , 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 sad 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

pettyprudence Fri 21-Jun-13 20:17:36

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.

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