HELP - Silent Reflux Baby Worse on Omeprazole - can't take it anymore

[stardust599]

Please don't read and run!

I really hope someone can help, sorry for the long post but I want to get the full story out and hope someone with experience can help.

LO was breastfed for 2 weeks, we thought she had colic as she was always crying and unsettled, constantly feeding and also projectile vomiting. Stopped BF and changed to formula

Was on Aptamil 1 for a few days and seemed better, then started to get colicky and have problems with wind and constipation

Changed to Aptamil Comfort, didn't help and made LO have painful wind from bottom end

Changed back to Aptamil 1 and persevered

4 weeks old - LO started becoming awful at some feeds but not all. Would scream/arch back/shake head/refuse bottle and was always really upset afterwards. Still though it was just colic so persevered.

5-6 weeks old - getting much much worse on the bottles, screaming most of the day and hardly ever sleeping, start to research and think she actually has silent reflux. Still projectile vomiting but only every other day or so.

6 weeks old - started on infant gaviscon which didn't help and made her horrendously constipated

6-7 weeks old - changed to SMA Staydown for reflux and things seem to settle down, looks like we have a changed baby. starts to eat more and sleeps much better at night although still poor through the day

7-8 weeks old - things start to get much worse again but we keep being fobbed off with colic, wind etc. by doctors and health visitors, weight gain has slowed down and baby not eating much. still bothered by constipation and often green poo. never sleeps either although still not too bad at night

8 - 9 weeks old - getting so much worse, took LO to a&e after 15hours of constant screaming and no eating. still feeds and sleeps quite well at night though. got to see a paediatrician who watched macy eat (or refuse to eat) and checked her over and properly diagnosed silent reflux. started on omeprazole and have a referral to see a consultant paediatrician on the 18th.

Now been on Omeprazole about 5 days and things are still getting so much worse. Every single feed is an absolute screaming match, no sleep at all during the day and she is even starting to refuse the night feeds which have always been her best. She seems to be happy-ish sometimes throughout the day but at feeds times she is horrendous and it takes ages to calm her down.

She takes around 1-2oz each feed now (was previously finishing 4 and the odd time 5) and sometimes completely refuses to eat for around 6 hours. Over 24 hours she'll have around 15-18oz - this is getting progressively worse though. Her last weight 2 weeks ago was 8lb6 although I won't be surprised if she's starting to lose weight now.

Also still has green poos and occasionally has blood in them - think this may just be the constipation though.

I'm at the end of my tether now, I can't take the crying any longer. I hate the fact that I have to put my LO to bed hungry because she won't eat, it breaks my heart. The only time I can really get her to take a bottle now is when she is in a deep sleep around 11pm, she usually finishes this bottle and it's tearing me up how hungry she must be. A bath doesn't even calm her down anymore and I spent most of the day rocking/shhushing/cuddling her to calm her down.

Yesterday I couldn't take the crying any longer and had to put her down in the pram while I went into another room for 2mins to take a breather, by the time I got back she was hysterical and I couldn't calm her down. My OH managed to calm her down when he came home from work and I've been haunted by guilt ever since.

She's hardly eaten at all today -

7am 1oz
10am 4oz
1.30pm 1.5oz
4.30pm 1.5oz
7.30pm 1.5 - 2oz


Will probably take a 4oz dreamfeed at 11pm and then around 2-3oz overnight, it's just not enough for a baby to be healthy at 9 and a half weeks!

I just want to help her.

Do you think she could also have a milk protein intolerance? She's never had diarrhoea though so I'm not sure.

I'm 99% sure it's definitely silent reflux as she has all the symptoms but she does seem to have been getting worse since starting the omeprazole. Although before starting it she was getting much worse anyway so I'm not sure.

I just can't take it anymore

xxx

 

[stardust599]

Also, she seems to be a bit delayed - my friends have LOs of around same age who are giggling away, reaching for toys etc. and we can barely get a smile out of her - I think it's cos so much time is spent screaming and comforting we don't have any time to interact with her. xx

 

[_Vicky_]

oohh sweetie I didnt want ot read and run - I have no advice at all tbh - although I would be tempted to be banging the doctors door down first thing tomorrow demanding more help

big hugs xxxx

 

[sjminimac]

i really don't know what to say. You sound like a strong woman who's devoted to her little one. to you x

 

[icy1975]

That sounds like the first few weeks of Lucy's life, it was awful and not what I signed up for at all, I honestly didn't know how we would cope with a baby that we just couldn't settle and wouldn't sleep, I was exhausted and in tears most of the time. I had a friend who'd posted on facebook about their baby having silent reflux and just out of interest googled it to find out what it was and found that the symptoms matched Lucy's exactly, so off I went to see the nurse practitioner who basically told me my baby was unhappy because she didn't have a routine, practically called me a bad mother! I left the Dr's in tears because it felt like no one would listen to me, so to cut a long story short my mum rang our midwife and explained the situation, she said to make an appointment with the Dr and to not leave until they gave us something, we did this and started on the long road to finding something that would help Lucy. I know you probably don't feel like it but you're one of the lucky ones with a proper diagnosis and so you don't have to argue and fight to get people to believe you any more.

We tried infant gaviscon, which didn't help, ranitadine which again didn't help and finally our HV suggested trying Enfamil AR which is a medicated formula which thickens in Lucy's tummy, after realising that we needed teats for thicker liquids, she was a totally different baby, our baby who before would just scream at us and generally look happy started smiling and interacting how you would expect a baby to do.

If I were you I would take my baby to A&E during one of her screaming fits and not leave until it's sorted, if that means admitting your baby to a ward then so be it, if she's losing weight it needs sorting out.

Good Luck, and sorry my post is so long and probably not much help but it helps me to know I'm not the only one going through things and that it does eventually get better and remember that you are a fantastic mum who is doing the best that you can for your baby!

 

[kerry1981]

Oh definately try and get an appointment with that paediatrician you saw before and see what they say. I sometimes have an awful time with Jenna when it comes to feeds just like your lo. I took her to the docs and got Infant Gaviscon which I don't think made that much difference so stopped it.

I was also like you worrying that she was barely eating anything, some days the most I could get down her was 16-18oz and she always ate better once she had been sleeping i.e after going down for the night and then waking about 30 mins later. Have you tried feeding her once she is sleepy, try and get her to nearly fall asleep in your arms and then slip the bottle in? I had some success that way?

To be honest Jenna still has days like this and then others will be ravenous, so I can't be much help but it seems to be getting better but it does seem like your lo has it much worse than Jenna so def try and get some more help and don't be fobbed off.

Oh just to add, do you think your lo might have a dairy intolerance? You thought about soy formula??

 

[stardust599]

Oh definately try and get an appointment with that paediatrician you saw before and see what they say. I sometimes have an awful time with Jenna when it comes to feeds just like your lo. I took her to the docs and got Infant Gaviscon which I don't think made that much difference so stopped it.

I was also like you worrying that she was barely eating anything, some days the most I could get down her was 16-18oz and she always ate better once she had been sleeping i.e after going down for the night and then waking about 30 mins later. Have you tried feeding her once she is sleepy, try and get her to nearly fall asleep in your arms and then slip the bottle in? I had some success that way?

To be honest Jenna still has days like this and then others will be ravenous, so I can't be much help but it seems to be getting better but it does seem like your lo has it much worse than Jenna so def try and get some more help and don't be fobbed off.

Oh just to add, do you think your lo might have a dairy intolerance? You thought about soy formula??

We have an appointment with a consultant paediatrician on the 18th, think I'll be phoning tomorrow and begging them to bring it forward!

I try feeding her while she is sleepy and she usually drinks a bit then the screaming starts, it takes me so long to settle her I'm always too frightened to offer her the bottle again as the whole cycle will start again. Her dreamfeed at 11pm is always her best feed though but she never seems in a deep enough sleep any other time for it - at best she has restless naps for 20mins or so throughout the day.

I thought about a dairy/lactose intolerance but I'm just not convinced - she doesn't have wheezing/rashes etc. and has never really had much diarrohea. She did have quite runny poos before we started the Staydown milk but it was only every 3 days or so and the stuff I've read online seems to suggest that it'd be at it worse 30mins after a feed but it's always during the feeds the screaming starts. She does always have a gurgly rumbling tummy and tummy cramps I think though, I also ate a hell of a lot of dairy when I was BF and it didn't seem so bad then, is it possible for intolerance to get worse as baby gets older? xxx

 

[stardust599]

That sounds like the first few weeks of Lucy's life, it was awful and not what I signed up for at all, I honestly didn't know how we would cope with a baby that we just couldn't settle and wouldn't sleep, I was exhausted and in tears most of the time. I had a friend who'd posted on facebook about their baby having silent reflux and just out of interest googled it to find out what it was and found that the symptoms matched Lucy's exactly, so off I went to see the nurse practitioner who basically told me my baby was unhappy because she didn't have a routine, practically called me a bad mother! I left the Dr's in tears because it felt like no one would listen to me, so to cut a long story short my mum rang our midwife and explained the situation, she said to make an appointment with the Dr and to not leave until they gave us something, we did this and started on the long road to finding something that would help Lucy. I know you probably don't feel like it but you're one of the lucky ones with a proper diagnosis and so you don't have to argue and fight to get people to believe you any more.

We tried infant gaviscon, which didn't help, ranitadine which again didn't help and finally our HV suggested trying Enfamil AR which is a medicated formula which thickens in Lucy's tummy, after realising that we needed teats for thicker liquids, she was a totally different baby, our baby who before would just scream at us and generally look happy started smiling and interacting how you would expect a baby to do.

If I were you I would take my baby to A&E during one of her screaming fits and not leave until it's sorted, if that means admitting your baby to a ward then so be it, if she's losing weight it needs sorting out.

Good Luck, and sorry my post is so long and probably not much help but it helps me to know I'm not the only one going through things and that it does eventually get better and remember that you are a fantastic mum who is doing the best that you can for your baby!

Thanks, we're already on SMA Staydown - I think that could be similar to Enfamil AR, she was much happier when we started it but seems to be worse again now.

I'm so frightened of her being admitted to a ward and tube fed
xxx

 

[blahblahblah]

I don't claim to be an expert on SR, but from what you've said, there are a few things I can think of that might help a little...

1. constipation causes lack of appetite, refusing feeds even if they seem hungry, painful wind, and sometimes screaming and arching back when feeding. It could be that if your LO has gotten constipated you cannot see the benefits of the treatments you're trying. Try offering 1-2oz of cool boiled water daily. It takes a few days to work its way through, but should ease the constipation.
2. formula changes and digestive meds can take up to 2 weeks to work fully and for your LOs tummy to settle down with them. Some make things seem worse before it gets better. It may be worth persevering a little longer with some of them.
3. green poo is common with non-standard formulas - it is rarely anything to worry about.
4. have you tried a different brand of bottles? Dr browns are good for LO's with tummy trouble, as they take in less wind when feeding. A lot of the meds and special formulas are thicker, so you may need a faster teat than the age ranges suggest.

I hope you start to find some solutions soon, it sounds like you're doing everything you can

 

[duffers]

Hello. Saw this thread and wanted to pop in and give you a hug.
Our LO was diagnosed with silent reflux at 8 months and is still on Omeprazole now. I remember all of these symptoms so well. It sounds like you are coping fantastically. I was a wreck and convinced that I was an awful mother. As it was my first baby I just assumed that all babies writhed around in pain during feedings, screamed all night, screamed in the car seat etc etc.... I remember people (HVs!!) telling me about establishing routines and letting her cry a bit and I wanted to slap them. It's not possible for a mother to ignore a baby screaming in pain is it? It's a totally different ball game to a 'normal' cry.

It's great that she has been diagnosed now. I'm assuming that the paed will rule out other possible causes (allergies etc) and then it is just a case of finding the right meds for her.

What dose of omeprazole is she on?

When Es was 1st prescribed it it was in combination with domperidone but didn't make a scrap of difference. In despair, we went to see an amazing private gastroenterologist who said that she was on an 'insignificant dose' and more than trebled in and hey presto - no screaming and slept through the night.

This will get sorted out and you're not alone.

xx

 

[RHR]

Hi hun, I'm so sorry you're having to cope with this. Just a thought, could she be allergic to lactose or dairy? Could you see if they'll test to see if she's allergic to milk and put her on to something like infasoy ( I think it's called).

This is just a wild guess and anther thing for you and your OH to consider, if you haven't already.

I don't have any other answers or suggestions for you. Good luck and let us know how you get on.

 

[2016]

I feel your pain Reflux us really making my LO miserable too. You say yours has silent reflux...but I thought that was when they don't spit up? Dont think matters as the treatment is the same.

I was also fobbed off at first - they said he had a cold...then another...then another Then it was colic, then his routine to blame. Like you o did my own research and went back to the doc only for her to say "oh yes that is a common problem". WTF? If that's a common problem then why did it take 3 weeks to diagnose????

Anyway, had Infant gaviscon first until we hit the constipation problem. The packaging says nothing about that as a side effect and consequently the doc didn't believe me! Do next we tried 5ml omeprazole once a day but it was a traumatic fight to get LO to take it. It never seemed to do any good (and I know from taking omeprazole for reflux myself it should actually start improving things in a day or two).
So now we are on ranatidine (0.5ml 3 times a day) which has half improved LO but ge often would spit up the whole dose so now I give the dose along with one sachet of gaviscon and 0.5ml of prune juice and 0.5ml water which relieves the constipation.
I wedge him at a slight angle at all times and hold him upright for at least 15 mins after every feed. This seems to be working for us although he's not 100%

Don't know if any of this helps, it's just my experience. Try hang in there because you really aren't alone in this misery. I hope you get your LO sorted soon...I agree with other posts - tell those docs what's what and demand some help cos it's not fair on either of you.

 

[duffers]

Ps I'm assuming that you're doing things like trying to keep her upright or propped up as much as possible etc. (I'm hoping that the knowledge in the books that are still propping up the head of Esme's cot will somehow seep into her over time but I may be being overly optimistic).

Feeding little and often.

We found that white noise helped Es calm down during feeds and sleep a little better at night. Downloaded a track called 'White Noise for Baby Sleep' from the internet and played it quite loudly and it seemed to help.

Will have a think back and post again if I remember anything else that we did that made life a little easier.

 

[2016]

Two more thoughts...

I don't think infant gaviscon should be given with any of the thickened formulas cos it's purpose is to thicken stomach contents anyway.

If you are wondering about lactose intolerance, why not try Colief? It helps LO break down lactose.

Duffers...you just inspired me to play White noise to my LO - worked a treat! Found an iPhone app that does sounds esp for a baby eg. Heartbeat, womb sounds, car ride, vacuum, fan but then also normal White noise.

 

[stardust599]

Thanks guys

Just a little update. We had to go and stay in hospital as Macy wasn't eating at all and screamed for hours at a time. She was going to be tube fed as she was dehydrated but we managed to get her to take little bits every now and then and they sent us home with Neocate for a possible cow's milk allergy. I thought it was making a difference but I think she was just having a good day as now it's gone worse again and the Neocate is giving her diarrhoea.

I just don't know what to do anymore

I'm so exhausted, I can barely listen to the screaming anymore and I just want her to eat and gain weight. She hasn't eaten today and yet again I've put her to bed hungry without taking a single drop. Going to try dreamfeeding her at 9pm and 11pm if she stays sleeping as she always seems to take the dreamfeeds better.

I'm trying Dr Brown's bottles next so hoping it makes a difference and we're back to the paediatrician on Tues, I think I'm going to beg him to do something.

Will reply individually to posts when I have a min xx

 

[stardust599]

I don't claim to be an expert on SR, but from what you've said, there are a few things I can think of that might help a little...

1. constipation causes lack of appetite, refusing feeds even if they seem hungry, painful wind, and sometimes screaming and arching back when feeding. It could be that if your LO has gotten constipated you cannot see the benefits of the treatments you're trying. Try offering 1-2oz of cool boiled water daily. It takes a few days to work its way through, but should ease the constipation. Thanks, I try to get her to take water but I can barely get a bottle near her mouth. I've taken to syringing her some prune juice mixed up with water and it helps but she's now been changed to Neocate which is causing diarrhoea
2. formula changes and digestive meds can take up to 2 weeks to work fully and for your LOs tummy to settle down with them. Some make things seem worse before it gets better. It may be worth persevering a little longer with some of them. Thanks, we stuck at the Staydown for a few weeks and it did seem to help a bit, she's been on Omeprazole for about 2 weeks now and to be honest I don't think I'm seeing a difference. She's now been on Neocate for about 5days for a possible milk allergy but I think she's getting worse, is it worth persevering?
3. green poo is common with non-standard formulas - it is rarely anything to worry about. good to know!
4. have you tried a different brand of bottles? Dr browns are good for LO's with tummy trouble, as they take in less wind when feeding. A lot of the meds and special formulas are thicker, so you may need a faster teat than the age ranges suggest. I've just been offered some Dr Brown's bottles by a very kind lady on here, if she goes back to the Staydown I'll get the variflow teats

I hope you start to find some solutions soon, it sounds like you're doing everything you can

Thanks so much for all your suggestions and support xx

 

[stardust599]

Hello. Saw this thread and wanted to pop in and give you a hug.
Our LO was diagnosed with silent reflux at 8 months and is still on Omeprazole now. I remember all of these symptoms so well. It sounds like you are coping fantastically. I was a wreck and convinced that I was an awful mother. As it was my first baby I just assumed that all babies writhed around in pain during feedings, screamed all night, screamed in the car seat etc etc.... I remember people (HVs!!) telling me about establishing routines and letting her cry a bit and I wanted to slap them. It's not possible for a mother to ignore a baby screaming in pain is it? It's a totally different ball game to a 'normal' cry.

It's great that she has been diagnosed now. I'm assuming that the paed will rule out other possible causes (allergies etc) and then it is just a case of finding the right meds for her.

What dose of omeprazole is she on?

When Es was 1st prescribed it it was in combination with domperidone but didn't make a scrap of difference. In despair, we went to see an amazing private gastroenterologist who said that she was on an 'insignificant dose' and more than trebled in and hey presto - no screaming and slept through the night.

This will get sorted out and you're not alone.

xx

Ooh I've wanted to slap a few health visitors and doctors, especially the one who suggested that "she just might not like the taste of her milk" or "some babies are just fussy". She's still getting worse

She's only on 3mg of Omeprazole once a day, her weight is 9lb. I think I might ask them to increase it when I see paed on Tues. How do I find out about private gastroenterologists, I'm finding everyone I see useless and I need someone to listen.

I think part of the problem is I have PND and they think I'm just overexaggerating or making a fuss. They keep suggesting I need a break and I just want to scream "I don't want a blood break, I want you to help my baby!!!"

Thanks, I hope it does get sorted xx

 

[stardust599]

Hi hun, I'm so sorry you're having to cope with this. Just a thought, could she be allergic to lactose or dairy? Could you see if they'll test to see if she's allergic to milk and put her on to something like infasoy ( I think it's called).

This is just a wild guess and anther thing for you and your OH to consider, if you haven't already.

I don't have any other answers or suggestions for you. Good luck and let us know how you get on.

Thanks, we're now on Neocate which is 100% hypoallergenic but I'm not seeing a difference so I'm now convinced it's just pretty severe reflux. Only been on it 5days though so will persevere another few days x

 

[rachxbaby1x]

Ahhh hun, im sorry ur having such a bad time xxxxxxxxxxx
Harrison has silent reflux and also a suspected lactose intollerance, and ur LO symptoms sound exactly like Harrisons I know how u feel, i could have pulled my hair out some days, and spent alot of days in tears with Harry, as i just didnt know what to do anymore, and people kept telling me 'he's just a wingey baby, thats just him' also the first dr i took him to told me that 'mistakes can be made when sterilising the baby bottles etc' WHAT?!?!?!?!? Basically calling me a thicko and im a 1st time mum so obviously dont have a clue...................................KNOB!!!!! (how frustrating)I cant really suggest anything u havent already tried.
The only peace of advice ill give u is be persistant (sp?) with drs etc they are rubbish and do tend to fob us mums off!
I hope ur LO improves soon hun xxxxxxxxx
Hugs for u both xxx

 

[LeighNutricia]

Hi, sorry to hear your LO is struggling, there is nothing more frustrating that waiting for a combination of meds/formulas that work. Hypo formulas like Neocate can take a few weeks to have an effect; it is completely different for each child - which is a pain when all you want are instant results! You are right though if there is no improvement then cows milk proteins must not be the underlying cause of the reflux.
The Neocate shouldn't cause diarrhoea but if you have found this has happened and hasn't improved with time it may be worth speaking to your dietitian/dr. They may recommend a weaker dilution just to introduce the formula then go up to the recommended over time.
Are you making to label instructions at the moment? I know other mums that I’ve spoken to in the past have added an extra scoop in to try and thicken the Neocate but this will just concentrate the formula and increase risk or diarrhoea so best to avoid this.
I hope LO is feeling better soon!