Desperate reflux mum! Any advice please!!!

(27 Posts)
lem31 Fri 26-Jul-13 20:39:33

Sorry to keep harping on, but I'm feeling really low and desperate and need help.
Fairly certain 7 week old baby has reflux. About 4 weeks ago he started really fussing on the breast, arching back, crying, obviously in pain. Sick a lot etc. stopped sleeping in his Moses basket... Through chance discovered tht he was fine on formula. Eventually doc prescribed infant gaviscon, 1/2 sachet in feeds. Couldn't get him to take it except in bottle and as he was better on firmula anyway I took the hard decision of stopping bfing. I did it gradually but have now stopped altogether and haven't had to express the last 2 days so just drying up. But baby just started being really sick on formula too, screaming in pain, arching back etc.

I don't know what to do. Can go back to docs on Monday but he has made me feel like I'm being fussy mum. Baby been on gaviscon for 2 weeks. Been to see chiropractor but no help so far. Bought sleepcurve mattress that I thought was working but just getting covered in sick every night. I've got the moses basket elevated, spend most if the night with baby on me keeping him upright but nothing is helping. I'm averaging less than 2 hours sleep a night in half hour stints as baby obvoisly finds lying down uncomfortable and wakes within half hour.

I'm exhausted, feel horribly guilty for stopping bfing, especially as it hasnt helped and don't know what to do to stop him being in pain. Please help! I am really desperate.

cookiemonsta Fri 26-Jul-13 20:43:05

I dont know much about this subject, but have a friend who has 2 children , both who suffered from infant reflux and lactose intolerance. It sounds very much like what your little one is going through. She couldn't breast feed because of the lactose and both children went on to lactose free formula. Try you drs again. I can recommend books by Alison Scott-Wright concerning this subject

Hope this helps
xxx

Kafri Fri 26-Jul-13 20:49:44

Get back to the docs and ask to be referred to your hospital.

We had to try a lot of variations before we found the right one.

Infant Gaviscon - made him constipated and ended up on Lactulose
LF milk - no better
LF milk and Ranitidine - no better
Cons wanted to try LF milk and gaviscon but I said I was reluctant after the constipation last time
CMPF milk and Omeprazole - never looked back

I was told many times by mw/hv/complete strangers that I was just being a fussy mum but I KNEW there was something wrong so I kept going.

His consultant made it clear that there was no immediate fix and it would be trial and error until we found what worked for him and it was bloody hard work.
He slept upright for the first 8 weeks of his life and moving on from that he slept on his tummy (and still does).

SleepyFish Fri 26-Jul-13 20:53:01

Gaviscon is rubbish. Domperidone and ranitidine are what you need for reflux. Go back to docs and insist on a paediatric referral if he won't take you seriously.
I got fobbed off far too long and ds and I suffered needlessly until I insisted on a referral.
Please don't take no for an answer. The sleep deprivation is torture, get help now.

SleepyFish Fri 26-Jul-13 21:03:23

Just seen kafri's post. Sorry should have said those were the drugs that worked for ds and others I know, obviously there are other combos that work.
Very similar experience though Kafri, it amazes me and angers me that reflux is so common yet GP's, Hv's and midwives don't take mothers seriously. Once you learn about reflux you see how obvious the symptoms are so why can't the professionals?
It still upsets me when I think of the pain ds suffered unnecessarily.

lem31 Fri 26-Jul-13 21:05:08

Yes, it is torture and its making these first few weeks not enjoyable at all. Someone suggested filming the feeds to get docs to take it seriously. I think ill try that too. Until its sorted nothing s going to help the sleep I guess so just have to get on with it. I wish hubby was a bit more supportive but he doesn't get it at all. Not the reflux, the lack of sleep, none if it. Guess that's another subject though...

lem31 Fri 26-Jul-13 21:07:31

I agree sleepyfish, its awful seeing them in so much pain. I normally end up in tears when he can't eat. Just wish he was ok. sad

Kafri Fri 26-Jul-13 21:16:47

Sleepy the reason the health professionals don't take it seriously is cos they don't have to live with the torture. They literally see 10 mins of it while they do their once over and then wave you out of the room to make room for the next patient. Along with the fact that baby can't say whats wrong so it's like it's not happening. The number of times I heard 'babies do cry you know' Aarghhhh!!

DS would scream, literally, 16 hours a day - he was just inconsolable, wouldn't be put down as he wouldn't tolerate being on his back.

I felt soooo guilty - DS was IVF and I felt so awful that I just was not enjoying having him - I would challenge anyone to have actually enjoyed having him. DH and I did shifts for the first 12 weeks - i got up at 1am to allow DH to get some sleep for work. I'd be with DS until 6pm when DH arrived home and took him to allow me to get some sleep and then i'd get up at 1am and do it all again. One of us had hold of him literally 24 hours a day.

My HV used to tell me to put him down on his mat on the floor and have 10 minutes on the other side of a door but I couldn't make her see that I was so exhausted that I didn't have the energy to calm him down again once I got back from my '10 mins' and it was easier to just not have the 10 mins.

SleepyFish Fri 26-Jul-13 21:22:48

Hope you get the help you need soon, everthings easier when you're getting sleep. He will get better with the right help. Meanwhile I found just keeping him upright all the time helps which more or less means having them permanently attatched to you. ((hugs))

PK1975 Fri 26-Jul-13 21:30:22

We had the same with our dd. Gaviscon didn't work for us. We were prescribed ranitadine and I alternate bf with cow and gate reflux formula (can buy it from boots). If I bf she throw up but it no longer bothers her. She keeps all the reflux milk down. We started by giving her a bottle of it before bed and she slept a lot better. We now have a very happy baby

lem31 Fri 26-Jul-13 21:30:40

Shifts would be amazing. But not gonna happen in my house unfortunately.
Has anyone found any sleep products that help? Sleepcurve mattress claimed to, but found little difference. Looking at a sleepyhead bed guard. Looks comfy and will allow co sleeping which will sooth him at least, but not wanting to waste money. I know that it will pass, hopefully docs will help too, but I don't know how much longer I can not sleep for...

lem31 Fri 26-Jul-13 21:31:30

Ill try the reflux formula tomorrow then...

Kafri Fri 26-Jul-13 21:35:52

The only thing that worked for us sleep wise was on his tummy, and that was only once we got to 10 weeks or so.

PK1975 Fri 26-Jul-13 22:04:41

We raised her crib mattress by putting a towel under it - I couldn't find a wedge the same size. It did make a difference

SleepyFish Fri 26-Jul-13 22:09:34

Oh yes, the 16 hours a day screaming I'm familiar with. Everyone says babies sleep all day, ha.
Thanks makes sense though, obviously none of the health professionals we dealt with had experienced a reflux baby.
OP, I raised ds alone and honestly you need some support from your dp. He needs to get on board here.

nj79 Sat 27-Jul-13 21:58:19

Filming may not be a bad idea. I knew my baby had silent reflux but as there wasn't much vomit my HV just completely ignored me even though he dramatically slipped down the percentile chart from the 75th to the 9th. It wasn't until he had bronchiolitis and tried to breastfeed when I was in with the doctor that I got anywhere. As soon as she saw the arching, screaming and thrashing she sent us straight to hospital and he was diagnosed with reflux straight away. He was put on Rinitadine and within 3 months he had returned to the 75th centile. He went through months of needless suffering. At least we both slept well once he was better! Just don't worry about feeling like a fussy mum, do what you need to do to make him better! I will never let HVs, or any other health professionals make me doubt my instincts again. Good luck.

Ponyphysio Sat 27-Jul-13 22:03:46

SMA staydown was amazing for my DS

ab00 Sun 28-Jul-13 04:17:16

Reflux is bloody awful! It took us until ds2 was 8 weeks old for gp to diagnose silent (or in his case not very silent at all!) reflux following weeks of difficult feeds & no sleep for me until about 5 - 6am when dh would take overt cuddling duties so i could get a couple of hours before ds1 woke up, with the hv telling me it was colic & he would grow out of it. It was a living nightmare with me in tears most days with the sheer frustration & guilt at not being able to help him & exhaustion of looking after a newborn & a young toddler. Trust your instincts, you know your baby best & ifuyou get nowhere with 1 gp ask to see another. A combination of gaviscon & ranitidine really helped him with the symptoms but what has made the biggest difference has been getting a tongue tie snipped at 14 weeks old, followed by a short course of cranial osteopathy at the lactation consultants recommendation & has meant very quickly he is now off the medication completely. Have you had your lo checked for tongue tie? I'm not saying this is the cause for your lo but in my experience it was definitely an avenue worth exploring.
Have a look here as this gives more info about tt & some symptoms.http://milkmatters.org.uk/2011/04/15/hidden-cause-of-feeding-problems-however-you-feed-your-baby/
With the bf please try not to be hard on yourself, you did what you thought was best at the time based on the information you had & from the sounds of it with little support. If you've only just had to stop expressing in the last 2 days then chances are you could still have milk & could if you wanted to reestablish bf? Even if it wasn't to completely bf you could possibly reintroduce for some feeds if that's what you decided you wanted to do? Here's a couple of links to some info on it

theleakyboob.com/2011/12/your-guide-to-relactation/

kellymom.com/bf/got-milk/relactation/

Seriously though op try not to feel guilty,easier said than done I know from personal experience. You are doing a brilliant job & it will get easier!

Isitme1 Sun 28-Jul-13 10:22:01

Ive not read the full thread so sorry in advance if what I recommend has already been mentioned.
1-drs ask for referral to gastric paeds
2- book called colic solved. Google it its a life saver
3-littlerefluxers website. Again google it. Jenny there isan eexpert

Ask for omperezole and try stay down reflux milk.

My ds is 3 and he still has reflux and fed via tube into his stomach as he was too scared to take bottle due to pain. do not let gp fob you off you want this controlling sooner rather than later.
Something like 95% of babies wi5h reflux out grow it within the 1st year or something only tiny minority have it due to underlying illness after that age so dont think im trying to scare you just want to make you aware of things.
X

lem31 Sun 28-Jul-13 12:57:52

Thanks guys. Have had him on the Sma stay down for 2 days. He is less sick but is still in pain when he feeds and it seems o still be there with wet burps and a little sick. He has slept a little better though, had a stretch last night if a few hours which was unheard of a few days ago. He has been checked for tongue tie and he us fine, and I've been spending a fortune on a chiropractor who Liam's much success with this, but no help so far.
I'm gonna go to docs tomorrow with him and kick up a fuss. If nothing else I can't carry on like this with no sleep and he s in such pain it scares me he may begin to have problems with eating. I filmed it yesterday so will show it to docs.
I appreciate all the advice about how to tackle it.
I'm not sure if I can go back to bf or not. At the moment I still need to get gaviscon down him so he needs bottles until we find a solution, plus the reflux formula is helping a little so want to keep him on it. If he is given a different prescription it may be I can reintroduce it. I may start expressing to begin reintroducing for when we o find a solution.

Thanks again. Ill let you know what doc says tomorrow.

lem31 Sun 28-Jul-13 16:54:17

Oh god, after a day of him fighting the food, he just did a little poo and there was blood in it. Sorry for tmi but kind of dark red and mucusy. Took him to out of hours doc who said it could be any number of things, nothing to require a and e tonight but to see gp tomorrow and ask for paediatrician referral as it was 'important' (she was french so unusual turn of phrase). Anyone else had this with reflux or is it something else now???

Now freaking out....

ab00 Sun 28-Jul-13 17:16:38

Personally never experienced this with reflux. If you're not happy with what she has said go to A & E, if it's nothing to worry about they can put your mind at rest. Personally I would go rather than take a chance with a baby so young. Hope everything's ok, let us know how you get on.

SleepyFish Sun 28-Jul-13 19:14:05

Don't remember ds having bloody poos but it's usually a sign of colitis (especially if mucousy) so all related to digestion (but of course there are numerous other causes). Don't panic but yes definitely request an immediate paediatric referral and do not take no for an answer.

Mumtochops12 Mon 29-Jul-13 15:29:28

Hi, my little boy was diagnosed with reflux at four weeks old, four weeks of constant crying, arching his back and being sick after every single feed, very sick not just a small amount. He was and still is breast fed, it sounds like you had very little support with bf so don't beat yourself up about this. My LO was prescribed gaviscon at first which was no help at all, and eventually domperidone and ranitidine which has greatly helped,still on it now but no sickness whatsoever so hopefully off it soon. Looking back I wish I had made more of a fuss at gp surgery and with HV as nobody took me seriously at first.

Good luck and keep going back to drs if you're not satisfied, don't be fobbed off!

X

courgetteDOTcom Mon 29-Jul-13 15:34:08

We had to stop breastfeeding my son as he couldn't take neat milk and I couldn't keep up the demand. He has a thick milk the HV recommended, which has Gaviscon added to it, he's also having ranitidine and domperidone. He really does suffer sad he's got torticollis which is probably a side effect of it.

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