Refux again - Please advise me im falling apart

[whensmydayoff]

I have started a few threads so sorry if your bored of me!

DD 9 weeks has reflux as did her brother.
They were both 3 weeks and 1 day early strangely enough.

DD is much much worse.

She screams and screams and screams until we are both loosing our minds and crying too and throwing things with the frustration.

My DS is miserable too, he is only 2.9 yrs and has the constant screams of DD and 2 very stressed and unhappy parents with no patience for him .

Last night for example - 5pm to 11.30pm without a breath, she was purple, rigid and screaming until she'd take ages to breathe again.

She is on Omeprazole which eased it at first but not now and even after upping the dose yesterday morning, last night and twice today she is worse than ever.

When I BF feed her she arches her back and screams and fights with me but is sooooo determined to feed it's unreal. She is on the 75th centile and considering she was early weighing 6lbs, that is mad. she now weighs 11.4lbs already. Some refluxers over eat mistakingly for comfort but it makes it worse. I try very hard to space the feeds and make sure she has digested the last one.

My friend recommended I put her on a formula called Enfamil AR. Her friend apparently said it made her baby better. Im terrified I do it and she is worse as the doctors keep telling me BF is easier for them to digest and formula of any kind will make her worse.

I know im depressed now. I cant stop crying and I feel like ive been given a prison sentence. Please help with some advice.

[Owlingate]

Oh no me too, both DS had/have it, DS2 is 12 weeks and much worse, omeprazole not working too well, just added domperidone and seems to be doing a bit better. Have you seen paediatrician? If not demand referral, if yes ask for another appointment.

Whilst waiting get DD weighed again and ask GP to recalculate omeprazole dose, see if they will add in domperidone. Re BFing, its definitely better, Enfamil a thickened formula which can keep milk down for those that throw up loads but has mixed results for silent reflux. Have you tried going dairy free, has helped some people.

Really really sorry you are going through this. Re omeprazole, I was told that it shouldn't really stop working, if it seems to stop working then need to recalibrate dose. If you get her weighed GP may be able to do this by phone. Remember it can take 2 or 3 days on a higher dose to see result as throat will already be 'burnt' from not having high enough dose.

[jellybeans]

Hi, I can totally sympathise as my DS has reflux. He is now 15 months but it started soon after he was born. I bf him for 11 months then switched to formula as he self weaned. He wasn't any more sick on formula really but I am glad I stuck bf as long as possible. DS screamed night and day and didn't sleep at all at night for 3 months, it was hideous. he also is on Omeprazole and Domperidone (which help somewhat), gaviscon didn't work for him. My DS still has reflux but most babies grow out of it much earlier. He too gained good weight as a baby as he fed so much (every hour or two).

What helped us was a baby hammock (DS slept 5 hours from the night we got it), anything that moved, he liked a vibrating chair, music. All these things helped soothe him abit but when he was inconsoulable little worked, I too shed many tears in desperation..I hung on to the fact that it would pass when he is older (still hoping).

Thankfully he rarely gets like that now even though he still refluxes alot. Once they get mobile after a few months they can entertain themselves abit more and aren't lying down so much.

Another thing that helped my sanity was a book off amazon called 'colic solved' which covers everything on reflux.

When we doubled the does of Omeprazole it took a while to actually help (week or so) and sometimes DS is still in pain despite the meds. i think i accepted that it only helps about 50%. My DS tends to choke alot on his reflux and he cries as it is annoying too probably so hard to tell if he is in pain or discomfort. Maybe there are other meds you could try?

[whensmydayoff]

Oh Im sorry jellybeans that he still suffers. My DS calmed right down at 6 months when on solids and rarely cried over it although he still had it until 14 months.

DD is a whole new ball game. I was thinking she would be like DS by 6 months but probably not then.
I take it she will still cry as much all year?

Did the reflux mean they never got into routines and made them difficult?

My DS was pretty easy once on meds and slept even before he got the meds. He was a happy sociable baby and I enjoyed him. I can't see this being the case with DD.

They wont give me domperidone as it's silent reflux and she is gaining loads of weight so it wont help her.

Im relieved to hear it takes a while to work, I thought it wasnt going to work at all.

[willowstar]

hello

so sorry you are feeling so desperate and sorry to hear your little girl is in so much pain and discomfort. My little girl has reflux but was treated because she was 'failing to thrive'. She is on domperidone and ranitidine with gaviscon when I can get her to take it. It has made a huge difference. So this doesn't really help you as your little girl sound different, just wanted to say hello, it is a horrible thing to see your little person in so much pain isn't it?

[willowstar]

sorry, forgot to say that the only things that helped us when she was in very bad pain was the dummy which we held in while she was crying and carrying her in a sling and just holding and cuddling her and telling her how much I loved her! Pretty much nothing really helped but it made me feel better. She is a dummy addict and I am sure it is to do with the reflux, it really soothes her...convinced myself it helped her to swallow the acid/vomit back down but that is probably just fanciful.

[SilveryMoon]

My ds1 had quite bad reflux. It was awful. The screaming, the squirming, it was constant, horrid. I felt so helpless
He was really sick after every feed but because he gained steady weight, it took me 6 weeks to get the gp to take me seriously.
He was finally put on Enfamil AR and seemed better after the 1st feed!
He was still sick quite alot, well into weaning, but the screaming stopped and he didn't look like he was in constant pain.

[bigeye]

Have you thought about a cranial osteopath/chiropractor? No real experience but people report good things about them.

[RunningOutOfIdeas]

My DD had reflux. She grew out of it by 18 months. You have my sympathy. The constant crying is just so awful. I assume you have her cot and change mat raised. My DD often fell asleep better held almost upright on DH or me. She would wake as soon as we put her down, but at least we got a little bit of peace.

As others have said, it is worth checking that she is on the correct dose of omeprazole. It can be up to 20mg per day. With DD we found it worked better on an empty stomach - so at least 30 minutes before a feed. I would also insist on referal to a paediatrician.

It might be worth avoiding dairy in your diet, since reflux can be the only symptom of cows milk protein intolerance.

I took DD to an osteopath. I think it did help a little. The osteopath did some work on DD's diaphragm which she said was very high and tight. At the first session DD started off screaming but after just a few minutes she fell asleep lying on the osteopath's arm. Friends who saw her a few days later said DD seemed much calmer.

Have you tried lying your DD along your arm - face down, head towards your elbow, arms and legs dangling either side? Some find this helps. Also, I know we are told to put babies on their backs to sleep, but lying on the left side can help to close the top of the stomach. With DD, the first time I did this, it was almost like an off switch.

If your DD has been screaming for hours, it might be worth trying a dose of paracetamol. If it settles her, you have some proof for the doctor that she was in pain. DD had paracetamol on prescription from 4 weeks old because the GP said there was nothing to be gained from leaving her in pain.

Finally, when it all gets too much, wrap her up warm and go out for a walk. The noise never seems so bad outside and the movement of a pushchair can be soothing.

[foxinsocks]

sorry you are struggling

that pattern of evening screaming sounds like colic

I think you need to watch the over feeding - 1 of mine did this. I know people say you can't over feed breastfed babies but you can over feed a reflux baby imo.

Have you tried a dummy in between feeds (or encouraged her to find her thumb)? Not that I advocate them but for sucky babies they can help.

I do know how you feel. Both mine had reflux and multiple allergies and although I wanted 4 children at one stage, after having 2 with allergies/reflux/operations/in and out of hospital for almost 2 years, I could never have another one again as I'm not sure my nerves could manage!

[whensmydayoff]

Thanks everyone, It helps to hear people talking about it too. I know I will get out of it but I don't know how I'll get to the end of the week never mind a year.

I went to see a very good Oesteopath with a good name. After 5-6 sessions he said he could do no more. She too had a tight diaphram and he eased it a bit. Didn't stop the screaming though.

He showed me that over arm dangling position too, its called 'lazy tiger in a tree' which is cute and it does stop her for a bit sometimes.

I totally agree that dummies help refluxers, it really soothed my DS. After 5 weeks of trying and many different shaped dummies I gave up. She was hysterical when it went in her mouth and would gag. Im gutted because it was a god send with DS.

Moses basket is 30 degrees. She hates her cot.

And totally agree that a refluxy baby can over breastfeed. I get so irrate when people tell me they can't.
A breast feeding advisor just about started shouting at me over it, she was actually raging that I was arguing this.
My DH and I are small, my DS was small.
He weighed the exact same as DD at birth and was the same length. He was always around the 9th centile. She is galloping up the chart to 75th and rising. She is 9.3 weeks old and is in 3-6 months clothes and it's rolls and rolls of fat filling them!

She wants to feed constantly and if I let her she becomes colicy and refluxy and in much more agony.

I space the feeds out to 3-4 hours and struggle to do so. I sometimes give in after 2 if she is really upset about hunger.

When she feeds though, no matter how often, she doesn't stop. She never ever ever looks satisfied. The pain gets worse and she is rigid and arching, screaming and whining on and off the breast. It has me up the wall.
I have to hand her to DH to calm her down after I feel she is had enough and being sick.

Sorry im going on about it. I feel like I talk about it constantly, im going a bit mad!

[RunningOutOfIdeas]

I am sorry you are having such a rough time. It is good to be able to talk about it on here. I found that RL friends who had not experienced it themselves did not really understand.

Have you seen a paediatrician? If not, I really think you should insist that your GP refers you.

Also what dosage form is your DDs omeprazole in? Is it a liquid, tablets or do you have capsules to break open? When DD was switched from rantidine to omeprazole it seemed to work for a while and then stopped, but then I realised that I was not giving it to her in the best way. i.e. on an empty stomach and with something acidic, not milk.

[willowstar]

I completely agree that you can overfeed a breast fed baby but I got sick of being told that isn't possible. My little girl would feed and feed and feed and puke and puke and puke. the dummy definately helped with that and like you I have to be careful to time feeds well or she just throws it all back up again.

[JossC]

i also have 2 DDs with reflux (2 years & 14 wks).

14 wk old on omeprazole, which seemed to be getting less effective. pharmacist then told us that the lifespan of the solution is only 2 weeks when stored in the fridge, so you need to make sure that the prescription is fortnightly.

sorry for quick post, hope everything goes well. i know how difficult it is

[duende]

OP, I sympathise. My DS (6 mo) has reflux and it is truly awful. He is currently doing well on omeprazole and nutramigen (has cow milk protein intolerance and lactose intolerance as well).
What dose of omeprazole is your DD on? I have read that it can take a week or more after increasing the dose to see an improvement - this is because the esophagus needs time to heal.
I think that the max dose is 20mg, depending on the weight.
Do you know this website?

I would also suggest trying going dairy free, I know lots of people have had great results from it. It takes about 2 weeks to see an improvement if you're breastfeeding and eliminate dairy completely from your diet.

Good luck, I hope it gets better for you.

[duende]

I forgot to ask - is your DD on Losec Mups or the oral suspension? if it is Losec, have they explained to you that you shouldn't crush the granules?

[whensmydayoff]

Hi, Yes duende, Losec Mups. Nobody said anything but I basically disolve a 10mg tablet in 5mls of water. I sometimes swirl the syringe in it to disolve it quicker - is that what you mean?

She gets 3 mls in the morning and 3 mls at tea time.

The hospital referred m back to GP for ongoing appointments but I feel like they are clueless. Im going to ask to be referred back to hospital because she is so unwell.

Today I got a prescription for a formula designed for babies with reflux. I really struggle to feed her at tea time when first dose has ran out and new one hasn't kicked in so thought id try it for that feed.

I sooooooo wish I hadn't. DH currently in bedroom with her and hairdryer on as she's been screaming and majorly refluxy since.

I can't tell if it's just the change, just a bout of reflux which happened to coinside with formula feed or if the thickened formula is making it worse.

Her obsession with feeding is effecting the fact I can't bond with her, its hard to explain.

I can't soothe her or cuddle her. I can never calm her down because she just wants fed 24-7. I have a huge bruise on my chin where she latches on if I hold her.

I know she is in pain but I can't do anything, im helpless and getting very very withdrawn from her.

If I thought she could handle formula ok Id grab it with both hands. She would be able to calm right down with me and see me as more than a large bottle of gaviscon! My milk is making things so much worse with the overfeeding.

It frustrating because when she is calm the feeding is easy.

arggggh. Don't know how long this screaming bout will last, could be another hour, could be another 4.

[duende]

I rememeber when DS was so bad, whenever he started screaming, it could go on for hours and nothing we did helped at all. It made me so anxious and desperate I used to hear his screams in my sleep.
I have heard many b/feeding mums of reflux babies say that they struggled to bond with their babies because of the constant feeding and screaming. You're definitely not alone here. I stopped feeding my DS at 8 weeks because he fed consantly but also screamed when feeding and I thought it was because he wasn't getting enough. I only found out a few weeks later he had reflux

With Losec it's important to get the little granules in - make sure they don't stay in the syringe. We realised after the first few days that we were giving DS the liquid but not the granules and that was why it didn't work.
We dissolve a tablet on a medicine spoon and then tip it into DS's mouth, then flush whatever's left on the spoon, with water from a syringe into his mouth. Not sure if I'm making myself clear?
Also, maybe you could try giving her the whole dose in the morning? It should stay in her body for about 24 hours.

[duende]

oh, and don't beat yourself up about giving her enfamil AR. You don't know this is what caused the reflux to kick in. Many babies do well on it. We tried it for a while, DS was sick less, but was still in pain so it didn't work for us, but he had other problems as well.

Please consider going dairy free - apparently up to 40% of babies with reflux also have cow milk protein intolerance. For some of them eliminating CMP solves the problem, others (like my DS) need medication alongside the right milk.

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