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)

@Aandbchat if you look on this official website www.gov.uk/drug-device-alerts?keywords=Ranitidine you can check to see if your specific variety of Ranitidine has been recalled in the UK

@MissusMaker

This is so strange/bad that my practice and pharmacy are giving this information and medication?!

I'm not giving her the ranitidine to be safe ❤️

Doesn't look like our mg/ml has been recalled, would rather drop it anyway as so much meds.

Thanks again guys xx

So, not baby related but whilst I was pregnant tablet omeprazole did nothing for me where as capsules work really well. I know you can’t give babies capsules but I do think the medicine form makes a difference. Sorry if this has been said already, my tired eyes havnt read all the reply’s!

Oh my goodness - @Amychatfield I could have written exactly the same story!

My son is four and a half months and has silent reflux, he is on omeprazole and gaviscon but he is so hard to feed.

He had the tablets, but I think his dose needed to go up as they stopped working as he grew. I begged the GP for the ready made liquid form and we got it and it was working and then when I tried to get more they said it wasn't licensed and they gave me the powder that you mix into a suspension, but he hates it. He spits it out and screams when I try and give it to him.

I have gone back to the tablets but, like you, he is refusing to eat, takes a couple of gulps, screams in pain and refuses to eat. The only time I can get food in him is when he is half asleep.

Have you found a solution with the new milk?

@MissusMaker,
Sorry for late comment to this conversation but I'd just like to know your experience with Neocate? My 17 week old has reflux and is in omeprazole since 6 weeks and started Aptamil pepti 3 weeks ago but he's still very unsettled and lots of wind and reflux& tummy pains. I'm thinking of moving him to Neocate but pediatrician told me to give this milk 3-4 weeks which I have! Do you find it helped your babies?
@Amychatfield I hope your little one is doing better?

Hi @Deevie, my son switched to Neocate around 8 weeks. Might’ve been 10 weeks actually, we were put on gaviscon, ranitidine (before it was banned) and domperidone at 8 weeks and it didn’t help and by 10 weeks he was so unwell we were in a and e and they were talking about a drip. It was awful. Neocate saved us, it smells horrid but DS never cared, whether he just didn’t mind the taste, or if it was because it was through a bottle teat so harder to taste or maybe because the reflux had burned out his taste buds I don’t know but he drank it down straight away. It took less than 3 days to turn around for him once we started the Neocate - it was life changing.

My DD also had Neocate when she came along, she had horrific reflux but in her case Neocate made no difference, she clearly didn’t have an allergy/intolerance.

Anyway if you’ve done more than 2 weeks on Pepti then it’s clearly not working imo - time to try something else...

Hi Amychatfield.
I am a pharmacist so perhaps can shed a little light. In Ireland though, not UK but I would imagine similar. Omeprazole is always given in the dispersible tablet form to babies dissolved in water . It costs a few euros for a few months supply. The liquid omeprazole has to be compounded by a specialist manufacturer and has an expiry date of only 28 days. The only time I have ever seen it prescribed is for babies who cant feed orally and are fed though a peg-tube and the reason for using the liquid is not because it's better,it's because there is a minor risk the tiny particles in the dispersible tablet might block the tube requiring a hospital procedure to replace. One months supply costs 225e for a low dose.
There is a huge cost difference, and some childrens hospitals dont even use the liquid omeprazole for children with Peg-tubes because of cost. My patients hospital does. 3000e a year for what should cost maybe 60e
You can see yourself why it isnt given.
Possibly the original Losec brand omeprazole tablet might be slighly better than the generic brands.It is what we always use for babies.
Once your DC actually swallows it ,it really should make no difference whether its liquid or dispersible tablet form.
I hope perhaps changing the feed will help , but I would hope at 7 months you should be coming towards the end of it.
My sympathies I know its a terribly difficult issue tl deal with, but this too shall pass.

Hello guys,

Thank you for the messages.
I fought and fought about medication, 1 we couldn't get hold of and the 2nd had been recalled.
DD seemed to go through an even worse period sometimes getting by on 2oz a day.
I completely appreciated how busy the professionals are but I really had given up the other week. I had never been so low in my life.
I'm a very private person and I cried so hard to the HV on the phone, broke down, gave in.

I spoke with a pead again at the hospital and he told me to give her 4times the reccomended omeprazole for 2 days and then double her normal amount there after.
Still no improvement.

I brought an E book about feeding aversions.
The first page had me crying my eyes out. It literally described the last 5 or so months and every stage we have been through.
I read the entire book that night.
I honestly can not believe this but after following this woman's advice I now know that it is a behavioural issue rather than medical.
She is on no medication and hasn't been for 9 days, she is now waiting with an open mouth for her bottle at almost every feed.

The problem I believe was with her association with pain and the bottle and from the stress and anxiety of us being desperate for her to feed.

So far this book has completely changed our lives.

I still want to give this a little more time but would love to write something about our experience so far incase anyone else can benefit from it.
Apart from this thread I have no idea what I'm doing here, would I just start another thread?

Again, thank you all so much for your messages xx

@Junipajungle can you send me a private message please? Xx

@Moviestar hello, thanks for the message and thanks for explaining.
It's unfortunate that people obviously don't have the time to explain ☹️
We were given that particular medication after ending up in hospital, it seemed to solve everything until we needed some more.
We were told we couldn't have it after being prescribed it because it was too expensive,
During that desperate time for us we were just so adamant on getting more of this "miracle medicine" and I was so angry that someone had taken that away and that's what I obviously blamed for my child stopping eating.

If anyone just explained like you did we probably would have realised sooner that actually the medicine wasn't doing anything at all and it was all me 😭😭
I was so much more Relaxed when she had that medicine and it obviously rubbed off on her when I was anxious and desperate for her to take milk 😭
Thanks again. Stay well x

@Amychatfield thank you - I have private messaged you x

Youre very welcome and Im delighted to hear of the huge improvement. Fantastic news.
I'd be very interested to hear more about it.
As a matter of interest, Im just wondering why you think it started at 7 weeks. Were you breastfeeding and switched to bottles, or was baby always bottlefed? ( absolutely no judgement here),or was there something else you think started it?
Im very interested because we see this a lot in the job so might be able to help some else.

@Moviestar

Sorry really long message but may explain better;

I went to the Gp after being advised to do so by the HV. When getting babe weighed at around 7 weeks she has dropped 2 centiles.
The HV said to me "has Bowie been unwell" to which I replied not that I knew of, she just doesn't drink as much as "the side of the tin says".
She told me she had dropped 2 centiles and that I should be getting some help from the Gp.
I think my emotions were still all over the place and I burst into tears that my baby was potentially ill or not thriving and I didn't even realise.

When I went to the Gp, DD had no symptoms other than not drinking what I thought she should be and that was affecting centile growth.
We were advised to change formula to AOTA mil and given baby gaviscon. This bunged her up and then was given lactulose.
Because she didn't poop for days I think her milk intake dropped even more.

I think this is when my anxiety started about her feeding. I have learnt from "your baby's bottle feeding aversion" that all the things We were doing ie. wiggling the bottle to get her to drink the last oz, feeding her when she was sleepy (we were advised to feed her asleep if that's the only way she would take it) repeatedly offering milk, I would get really upset and stressed if she wouldn't drink (but not to the point I'd ever think she would pick up on)
These were all reinforcing her aversion with feeding.
This is absolutely not a blame game, however I saw so so many professionals, she ended up in hospital, a GP literally said the words to me "im stumped, I don't know", so much medication for reflux and all along it was me not realising that I was pressuring her.

The first page of this book had me in bits, it was as if I had wrote it myself, I finished the book in a night and started the advice the next day.
She is still averaging at 28oz a day, all awake, all mouth open waiting. Honestly changed my life.

I contacted the author to thank her, she told me that unfortunately and understandably medical professionals are looking for a medical answer not nessasarily to the mother or behaviour.
Bowie's milk intake went up when we changed formula for around 7 days, then again for a while when we were given omperazole pills (that we believed stopped working) and again when we were given the "magic medicine" liquid omperazole.
I asked the author why she showed signs of improvement and then stopped after so long. What she told me, looking back, is exactly what happened. She told me lots of mums when they are desperate for help feel a weight has been lifted when the baby has been assessed and medicated. We then "back off", relax, and the healthy feeding cycle starts. Until Dd would randomly refuse a bottle sending my anxiety through the roof.

When we got back from the hospital she hadn't fed for around 12 hours, we gave her the medicine and probably through pure hunger, she sank the whole bottle. I then left her to be for the next 3/4 hours and she drank the next one.

It is so damn obvious now I know.
I understand lots of baby's have medical problems but I now just want everyone to know about this possible cause.
I'm just a first time mum, bit ocd, bit obsessive, completely obsessed with Dd and simply just wanted her to feed and be well.

💖💖🎀

Thank you for sharing your story , that is actually very educational and I'm sure would help a lot of other mothers. Changing feeds can be very problematic as a lot of them are very constipating.First babies are always difficult as we learn as we go and we worry so much about everything!!!! Im delighted you have found a solution and hopefully you will start to enjoy your time with your DC much more.7 months is such a lovely age :) Enjoy your baby and best of luck for future.

@Moviestar thank you so much! Xx