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SILENT REFLUX HELP!

76 replies

leahmaysimmonds · 01/05/2021 20:08

My daughter is 8 months and there’s been a constant battle for her reflux since birth. I have tried everything for her reflux and nothing is working!

She has cmpa so we change to neocate lcp, I thought it would sort it from then as i thought her reflux was because of her allergy. I was told neocate is thinner than other formulas so the doctor recommended gaviscon. I tried gaviscon which didn’t work and seemed to give her a bad tummy. I then tried carobel but she had an allergic reaction to the soy. Thick and easy was next which was actually for 3+ years but doctor’s recommended it. That made her scream! So then I tried rice to thicken to milk and it made her cry and reflux flare up Confused I had enough so i put her on lansoprazole for a month which did absolutely nothing. She is now on omeprazole which is doing nothing but making her worse and not sleep!!
I burp her every 2 ounces and after, sit her upright 30 mins after feeding, give her reflux safe weaning foods and she sleeps upright with a wedge. All she does it wriggle in her sleep and hunch her back. It just seems to get worse and she gets older and I’ve had enough. What else can I do!!!?

OP posts:
leahmaysimmonds · 01/05/2021 23:44

@Chatanooga1

A baby swing?

Swinging motion helps free trapped wind.

Tried it. Doesn’t work xxx
OP posts:
leahmaysimmonds · 01/05/2021 23:45

@tink09

It doesn’t contain soya. My DD had soy and CMP allergy. It’s a prescribed hypoallergenic formula. It’s thicker than neocate so can be better if it’s for a baby who suffers with GERD. I think you need to start pushing for investigations incase they’re missing something. Allergy screening Bloods Xray PH study. These are all good places to start. Be firm and push at your next appt for something to be done.
You know what I’ll do that. She’s never had blood tests done x
OP posts:
Tigger83 · 02/05/2021 00:44

Ketotofin (spelling?!) helped dramatically with both my cmpa silent reflux babies along with a dairy soya gluten and egg free diet. My 11 month old still isn't fully resolved but getting there I think. Saw a wonderful private consultant for both my babies, an allergy expert paediatrician which really helped.

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leahmaysimmonds · 02/05/2021 01:52

@Tigger83

Ketotofin (spelling?!) helped dramatically with both my cmpa silent reflux babies along with a dairy soya gluten and egg free diet. My 11 month old still isn't fully resolved but getting there I think. Saw a wonderful private consultant for both my babies, an allergy expert paediatrician which really helped.
Just checked what that is, it only helps with allergies. Nothing with reflux. Reflux can be caused by allergies so it might’ve just helped the allergy. X
OP posts:
Iminaglasscaseofemotion · 02/05/2021 07:41

Almost everything on your list applys to my dd (3 months) I would also add, she generally sleeps for no more than 30 mins during the day, she coughs everytime she laughs or tries to make little noises, she chockes in her sleep and brings up little bits of sick even on her side.
As far as I know she's not allergic to anything, but I put her on lactose free milk myself because her wind and poos were shocking for a tiny baby (between birth and 6 weeks) bit no one would take me seriously, even although I'm sure both my boys were the same.

Iminaglasscaseofemotion · 02/05/2021 07:42

Not that any of that helps you OP. Have you been to a specialist? I have no idea if they would be able to help, but might be worth a try if you haven't.

tink09 · 02/05/2021 07:48

It felt like a battle getting someone to actually take us seriously and look into her symptoms. I literally sat in the consultants office and said I’m not moving until you start investigating why she is poorly instead of guessing.

Tigger83 · 02/05/2021 08:42

Yes often the silent reflux is triggered by the cmpa allergy/intolerance reaction, often diet changes alone don't make the difference.

hels71 · 02/05/2021 08:55

DD had silent reflux. The only things that helped were ranitidine and sleeping practically up right on my arm. The two of us slept almost sitting up for months....

leahmaysimmonds · 02/05/2021 10:27

@tink09

It felt like a battle getting someone to actually take us seriously and look into her symptoms. I literally sat in the consultants office and said I’m not moving until you start investigating why she is poorly instead of guessing.
I’m not guessing she’s been diagnosed x
OP posts:
tink09 · 02/05/2021 12:30

We did eventually get a confirmed diagnosis of GERD caused by a weak lower esophageal sphincter. We were giving confirmation of allergies following skin prick tests.

She was then put under the care of specialist teams who were then able to treat her properly. We watch for triggers which worsen GERD and ensure we keep her medication reviewed as she grows.
DD became a different child once she was on the right treatment plan.

leahmaysimmonds · 02/05/2021 12:56

@tink09

We did eventually get a confirmed diagnosis of GERD caused by a weak lower esophageal sphincter. We were giving confirmation of allergies following skin prick tests.

She was then put under the care of specialist teams who were then able to treat her properly. We watch for triggers which worsen GERD and ensure we keep her medication reviewed as she grows.
DD became a different child once she was on the right treatment plan.

Which treatment did you give her? I don’t think my doctor will do anything they’re really useless. X
OP posts:
tink09 · 02/05/2021 16:25

The most effective treatment was a combination of lansoprozole and domperidone.
You really need to ask the GP for a referral to your local paediatric team. You really need to get a propper assessment, treatment plan and monitoring.

leahmaysimmonds · 02/05/2021 16:35

@tink09

The most effective treatment was a combination of lansoprozole and domperidone. You really need to ask the GP for a referral to your local paediatric team. You really need to get a propper assessment, treatment plan and monitoring.
The paediatrician prescribed omeprazole. They haven’t monitored her at all xx
OP posts:
tink09 · 02/05/2021 18:11

Ask for a follow up appointment. Between now and then keep a diary of everything.
Then go to them with everything and say now you need to do something and I’m not leaving until you start finding answers. That’s what it took for someone to listen to us. X

leahmaysimmonds · 02/05/2021 18:34

@tink09

Ask for a follow up appointment. Between now and then keep a diary of everything. Then go to them with everything and say now you need to do something and I’m not leaving until you start finding answers. That’s what it took for someone to listen to us. X
To the paediatrician or doctors? My paediatrician is 2 hours away 😖x
OP posts:
tink09 · 02/05/2021 19:04

I’d say you need to go back to paediatrics. They’re better equipped to deal with this rather than the GP.
I hope you manage to get some support and answers soon. X

Tigger83 · 02/05/2021 19:53

Ok sorry I now have a bit more time to write! My son had silent reflux and allergies, it took me going to the health visitor for him to be weighed and he screamed blue murder, the health visitor called the senior over and asked me how much of the time was he like this, I said 90% of the time. I'd been to the gp 4 times and been fobbed off and told he's a baby of course he cries, it's normal for him not to sleep, feed him formula his weight gain is poor. I knew this wasn't normal. The Hv wrote in the back of my red book and sent me to the gp that day, he was useless but he did start us down the reflux route, with gaviscon which was a disaster. I was so desperate I went private to a consultant as ds was only sleeping for 20mins at a time, was hysterical most of the time and was failing to thrive, he turned my journey around.

Ds had green frothy explosive poos
Did not sleep for longer than 20 mins
Hysterical on back
Eczema
Pale and drawn
Bobbed on and off feeding clearly uncomfortable
Daytime would only sleep on me or upright on a sling night time would sleep 20mins then be up repeat all night.
Hideous mucus loose nappies
Would choke on his reflux daily but never sick

I was told to immediately cut dairy and soya, wheat, egg, I ended up cutting out sorbitol as well. He was prescribed omeprazole at a relatively high dose and ketotofin to calm the allergic response, he was prescribed a dairy and soya free formula for top ups and was put under a dietitian. It took 6 weeks for any real improvement and the improvement was small, he slept for 45 mins at a time, his nappies were slightly better etc. I introduced everything back apart from soya and dairy and by 13 months I was down to 4 wake ups a night, 15months 2 and off all medicine and back on dairy and soya and by 2 was sleeping through consistently. What I didn't realise was his nappies were still bad, I just assumed it was normal as I'd never had a baby before, only when I started to potty train did I realise he didn't have any control of his bowels and that they were looser than they should be and finally as things got worse and worse we're full of mucus. Long story short back to private paed, turns out he has a major gluten intolerance, we are just reintroducing other allergens and he is back on ketotofin and fingers crossed it seems to be working.

My dd had sever silent reflux but no real poo issues but lots and lots of foul wind, treatment has been the same, lansoprezole and ketotofin and cut major allergens with the hope of improving reflux which it has, sleep is still bloody awful but she is still reacting to something so have cut more from our diet to try and get to the bottom of it.

Reflux and diet go hand in hand and a good paed will support you with this. Unfortunately my experience of nhs support with This is awful (currently complaining to pals) but the private support has been second to none.

leahmaysimmonds · 02/05/2021 20:20

@Tigger83

Ok sorry I now have a bit more time to write! My son had silent reflux and allergies, it took me going to the health visitor for him to be weighed and he screamed blue murder, the health visitor called the senior over and asked me how much of the time was he like this, I said 90% of the time. I'd been to the gp 4 times and been fobbed off and told he's a baby of course he cries, it's normal for him not to sleep, feed him formula his weight gain is poor. I knew this wasn't normal. The Hv wrote in the back of my red book and sent me to the gp that day, he was useless but he did start us down the reflux route, with gaviscon which was a disaster. I was so desperate I went private to a consultant as ds was only sleeping for 20mins at a time, was hysterical most of the time and was failing to thrive, he turned my journey around.

Ds had green frothy explosive poos
Did not sleep for longer than 20 mins
Hysterical on back
Eczema
Pale and drawn
Bobbed on and off feeding clearly uncomfortable
Daytime would only sleep on me or upright on a sling night time would sleep 20mins then be up repeat all night.
Hideous mucus loose nappies
Would choke on his reflux daily but never sick

I was told to immediately cut dairy and soya, wheat, egg, I ended up cutting out sorbitol as well. He was prescribed omeprazole at a relatively high dose and ketotofin to calm the allergic response, he was prescribed a dairy and soya free formula for top ups and was put under a dietitian. It took 6 weeks for any real improvement and the improvement was small, he slept for 45 mins at a time, his nappies were slightly better etc. I introduced everything back apart from soya and dairy and by 13 months I was down to 4 wake ups a night, 15months 2 and off all medicine and back on dairy and soya and by 2 was sleeping through consistently. What I didn't realise was his nappies were still bad, I just assumed it was normal as I'd never had a baby before, only when I started to potty train did I realise he didn't have any control of his bowels and that they were looser than they should be and finally as things got worse and worse we're full of mucus. Long story short back to private paed, turns out he has a major gluten intolerance, we are just reintroducing other allergens and he is back on ketotofin and fingers crossed it seems to be working.

My dd had sever silent reflux but no real poo issues but lots and lots of foul wind, treatment has been the same, lansoprezole and ketotofin and cut major allergens with the hope of improving reflux which it has, sleep is still bloody awful but she is still reacting to something so have cut more from our diet to try and get to the bottom of it.

Reflux and diet go hand in hand and a good paed will support you with this. Unfortunately my experience of nhs support with This is awful (currently complaining to pals) but the private support has been second to none.

Hiya I cut out basically everything, gluten, egg, soy, nuts and milk but no change to her reflux. Paediatrician told me to try gluten and eggs which made no difference I think. X
OP posts:
Tigger83 · 03/05/2021 00:53

How long did you try it for? Did you Medicate at the same time?

leahmaysimmonds · 03/05/2021 01:40

@Tigger83

How long did you try it for? Did you Medicate at the same time?
She was free of gluten and egg for 7 months she’s never had it until now. Yes I was medicating her at the same time xx
OP posts:
Sidr · 07/05/2023 13:01

Hi Leah! I have an 8 month old in the exact same boat. Can you tell me what helped and how it unfolded?

jacquec · 07/05/2023 13:09

Sidr · 07/05/2023 13:01

Hi Leah! I have an 8 month old in the exact same boat. Can you tell me what helped and how it unfolded?

Have you had your child assessed for an oral tie?

Sidr · 07/05/2023 13:45

Hi! Yes she does have a mild prosterior tongue tie. No lip tie.

jacquec · 07/05/2023 15:28

Sidr · 07/05/2023 13:45

Hi! Yes she does have a mild prosterior tongue tie. No lip tie.

This is almost certainly going to be the cause of the reflux. 8 months is a difficult age to know what to do for the best with a tongue tie due to the increased complexity in releasing it. The likelihood is, assuming you wouldn't pursue having it released, she will just grow out of the reflux over time. I've been there with my now 1yo, so I'm happy if you want to PM to talk further.