Reflux baby on omeprazole and ranitidine

[Amychatfield]

First message, so hope I’ve got it in the right place 😂

Wondering if any mums can help,
Very, verrrryyy long story short;
My little girl has had problems refusing/fussing/crying when feeding from around 7 weeks old (now 7months)
We changed formula/gaviscon, saw a specialist at the hospital and they gave us omperazole (dissolvable pills) problem was solved for a few weeks and then she started refusing again, sometimes going down to 2oz a day!!
We went back and forth to the gp who told us every time “she looks well”
Daughter didn’t drink more than 6oz over two days, screaming in pain Constantly and I was at breaking point.
We took her to a and e and saw an amazing guy who prescribed us ranitidine (3 times daily) and liquid omperazole.
This was like gold and she drank 32oz in a day , she’s been a different baby and for the first time we’ve really been able to enjoy our time together.
When running low and calling our gp to get more she told us that the omeprazole was a special order and expensive so wanted to take her off it.
She had only been on it for two weeks and now she is back to not eating/screaming in pain.
I’ve ordered more liquid and they just gave me pills again which for some reason don’t work for her?! I broke down in tears and told them my child is literally starving.

I’m at breaking point, I feel like no one cares, I’ve been to the hospital, seen 4 different gps,every health visitor etc. daughter is so unhappy and skinny and I hate feeding her. I’ve just managed to get some milk into her sleepy and now feel terrible because she’s whining in her sleep in pain.

I don’t really know what I’m looking for here, maybe some advice or encouragement from mums that have been through the same xxx.

(She is also obs Sitting up and having solids)

This is tough, sympathies. 1) Ranitidine in all forms has been recalled due to safety concerns, I couldn't work our from your post if she is still on it but if she is please stop using it and consult a pharmacist ASAP.
2) liquid Omeprazole is sadly very expensive and is usually only prescribed in extreme circumstances. The GP can prescribe it but will need to be convinced - keep trying.
3) tablet omeprazole is still available in several forms, work with GP/pharmacist to find a form that works - if LO is on solids then dissolving it and hiding in yogurt may work better.
4) has anyone discussed the possibility of a dairy allergy with you?

Thanks so much for your message.

So the pediotritian at the hospital prescribed us both ranitidine and liquid omperazole.

He had sent over a letter and details to my gp so I could get a repeat set up but GP took us off the liquid and put her back on pills (we had these initially but it's stopped working for some reason after 2 weeks or so)

I felt really angry that it's taken us 5 months to get her eating without pain and it's been taken away against a specialists opinion because it's expensive.

They have it on order for me now but after doing lots of reading I'm worried she worse now more than ever because she's having "rebound"symptoms.

They have also ordered me more ranitidine?
This was only prescribed from the hospital about 3 weeks ago, will deffo be looking into this! Thank you! Xx

Also @MissusMaker
Never really had a problem getting the omeprazole in her, the pills just seemed to stop working?

And the gps and specialist at the hospital don’t believe her to have any signs of intolerance/allergy.

Xx

1. Ranitidine: definitely do check, the NHS page still shows it is unavailable due to a possible risk with ingredients www.nhs.uk/medicines/ranitidine/ I'd love to get my LO back on it because it was very effective for her but not worth the risk
2. Omeprazole: I agree it is very frustrating but I believe the liquid stuff is very expensive. We have it prescribed but mine had serious underlying health issues. If she takes the tablet form ok then it should work - have you looked up the guidelines of what it should/shouldn't be given with? I can't remember but maybe you aren't supposed to give it with milk?
3. Dairy: I'm not an expert but I'm surprised, given such extreme reflux symptoms that this has been ruled out. I would ask for this to be revisited, a months prescription of specialist formula isn't that expensive or difficult and was life changing for my son. Both my children had extreme reflux, I'm a lucky mum 😂

Ranitidine isn't available at the moment is it? Thought there was a big recall on it? My baby was on it and it was changed to liquid omeprazole.
I have tablet form for emergencies as sometimes liquid omeprazole can be hard to get hold of as it's a special.
I ordered some 2 weeks ago, pharmacy rang today. It's completely out of stock for them apparently so they have prescribed us the tablet form again,

@MissusMaker yes I understand, the annoying thing is, she had the pills and they don't work for her. I have begged for help every week since 7 weeks old, she's dropped 3 centiles from birth so I do believe it really is that bad. It breaks my heart I can hear her tummy rumbling and she goes to take the bottle but then screams and hits it away.

I don't really know where to go for help regarding allergy's etc, I think I may have to change gp practice. I'm speaking to all the right people but they simply said "she isn't showing any signs of allergy or intolerance"

I'm quite concerned about the ranitidine now? Will talk to them tomorrow, hospital prescribed it 3 weeks ago and gp put it on a repeat on Thursday for us to pick up tomorrow?? don't want to any risks to taking that on top of everything else.

Xx

There is obviously something very wrong for her to scream her way through on average 5oz a day, I worry that something is being missed or she is being caused more harm long term.
Do you think/know anything about seeing anyone private? Xxx

Much sympathy from me, I had a lot of difficulties when my son was small, he dropped several centiles, he would be starving and take a couple of sucks from the bottle then scream and push it away (and scream for hours). We got him on the special formula (Neocate) after taking him to a and e in desperation because the Gp wouldn't listen. It was the first time in weeks (and he was only 8 weeks) that he drank a whole bottle, he was a different child!

I knew someone who saw a private paed for her reflux twins, it worked for her but I don't know how much it cost/how it worked. You could insist on a referral to the hospital (paediatrician or even dietician) but I suspect at the current time it would be a long wait.

@MissusMaker Firstly thank you so much for your advice, I had a lot to get of my chest to someone that understands.
Hmm that's really interesting. So is that milk for an allerg/intolerance? If so was he showing any signs/symptoms?

We have been referred twice before, but the gps then takes it upon themselves over the phone to go against what they have advised 😮😞

We ended up in hospital because she was so dehydrated. Seem to be sent back and forth
Xx

Well the sign that he had a dairy intolerance was the severe reflux! That's why I'm surprised they are ruling it out for you. In his case because he was so young, loosing weight rapidly and also dehydrated they put him straight onto Neocate which is a top-tier formula, it has absolutely no dairy whatsoever in it and also no soy etc. For less severe cases they usually try a hydrolysed formula first - such as Aptimal Pepti - this is where the milk proteins are broken down chemically to make them easier to digest. It's hard to know what to suggest, with the benefit of hindsight and experience if I was in the same situation now I would cut dairy for a trial period, buy the formula myself if necessary and see how it goes. But I'm not advising you to do that because I'm not a doctor - I can only suggest talking to the GP again and have confidence in yourself. I'm guessing you are a first-time-mum? In my experience GP's can be very dismissive.

Oh crikey, you must be exhausted!

Push for a referral to paediatrics. This needs to be investigated.

Statements I heard regularly when DD was a baby: "some babies are sicky" "some babies cry lots" "some babies have lots of wind" "some babies poo a lot" "some babies get eczema/eye infections/nappy rash"

She sounded exactly like your DD. Unfortunately she wasn't put on dairy free milk until she was a year old. She changed within 3 days... it was phenomenal! I feel sick to think how much pain she spent that 1st year in.

You have my full empathy. I understand how horrible this must be.

@MissusMaker yes that makes perfect sense. We have asked every time, i now wonder why they wouldn't look into this before putting her on so much medication.

I am happy to buy/spend anything to have a feeding baby, I will try and speak with the gp tomorrow and see what they think, if it doesn't cause her any harm trying it then I will deffo buy it and see!

Yep first timer here, LO is such a happy babe until I bring a bottle anywhere near her 😞 just don't want to waste any more of our precious time together crying or her being in pain.

Thank you so so much for you advice and help and will this thread know how I get on xxx

My ds was on these and honestly the side effects are worse than the reflux. We had the exact same as you, went on it, it helped and then got bad again so then given ranitadine. Got better then got bad again. We were also given carobel which is awful stuff.

Honestly you're better managing holistically. Tilted bed, keep upright after feeding, feed small amounts often and ween onto single veg puree and baby porridge at 3 months. Any pain give calpol if you absolutely have to. Drugs just cause more problems and the reflux drugs can actually cause reflux! They made my ds so full of wind and so constipated he was in agony.

@Pulpfiction1 yeah this is how I'm feeling at the mo, gets better then stops working?

Another doctor told me that she's terrible at the moment because she's on a rebound for not having the meds, so producing more acid than ever.

We only got two good weeks out of the meds for her to be in pain now they have stopped it.

I'm scared that the poor thing is just going to be in pain, and that's obviously what the pediotritian put us on, but equally don't want her to be on all these meds that arnt actually working for very long!

Was it awful weaning you LO off meds? Xx

@Aandbchat no problem and good luck with the GP. If you do change formula you should note that it could take upto two weeks to take full effect but ime you should see a noticeable difference within 3 days. The dairy-free formula smells horrid but hungry children don't seem to mind.

FWIW my boy is 7 now, he grew out of his dairy intolerance by 18 months and is very healthy.

You poor thing I can remember those days of my daughter constantly screaming and writhing and refusing milk as though they were yesterday.

I really hope you get something sorted out OP. As if this isn’t all stressful enough.

Sorry you and your LO are suffering through this 💐

I just wanted to say, I’m an adult person who was on Ranitidine for GERD for six years.

Ranitidine got recalled after a contaminant was found in it and I was told my my GP last week that it was withdrawn from production when I asked if I could have it again yet.

Glad I joined this tonight, feel like I'm banging my head against a brick wall with all the people that should be helping.

Just needed to talk to some mums, will grow some and try and get some more help tomorrow! Night xx

@LordGarmadon thank you for your reply, probably a very stupid question.
If my lo wasn't showing any signs of discomfort (when on both med) when she was having dairy in solids and yoghurt would this rule out the dairy in the formula causing her discomfort? Xx

The meds could be masking the symptoms.

The good news about dairy allergy is that most children grow out of it my 3 years old.

If you can get suitable dairy free alternatives, I'd give her a week dairy free trial to see if there's any difference.

The only problem is that dairy free formula tastes gross! DD refused it so we put her onto oat milk, but she was over 1 Year.

You have to make sure she's getting enough fat, vitamins, and nutrients.

Insist on a referral to paeds though... whatever is causing that amount of reflux needs to be investigated... and any changes in diet need to be monitored by dietetics.

@LordGarmadon

Yep makes perfect sense, will get on to them...again 😞😂

Thank you so much

@littleduckeggblue @FlashesOfRage

If anyone is interested/wondering..
Just went to pick up medication for LO.
I asked what the situation was about ranitidine. The pharmacist told me it's the pills that have been recalled not the liquid 🤔 (which is what we wer on,I don't think I initially mentioned that)

Baby B has had two full bottles today which is so odd. Going to wait and see if it's just pure hunger for the poor thing or if maybe she's out of the woods with this awful "rebound" period.

Xx

@Aandbchat

Ahhh! I didn’t even know there was a liquid form 🤩

Thanks so much for letting us all know! X

Erm, I don't want to worry you but that is not correct, it's all forms of ranitidine that has been recalled. We used to have the liquid and I spoke with out paediatrician about it recently because it works so well for DD but was told not to expect it to be classified as safe for several years.