Reflux Help & Support Thread

[stephybump2be]

Kelly, not been on here for ages - hows the reflux goin now? Hope things are better x

 

[Farie]

Still struggling with the reflux Tried dropping her dose, not a success so she back on 20mg a day
I would also like to say 'I hate weaning puke' it sucks!

 

[KellyC75]

Kelly, not been on here for ages - hows the reflux goin now? Hope things are better x

Hiya ~ Thanks for asking My DD reflux is alot better now, however I am keeping her on the meds for now

Hows your LO?

Still struggling with the reflux Tried dropping her dose, not a success so she back on 20mg a day
I would also like to say 'I hate weaning puke' it sucks!

Oh dear ~ I was hoping that as you hadnt been on here for a while, Nim was doing better

 

[stardust599]

Oh no Farie, I thought things were better too

Macy still doing great, back onto 10mg LOSEC now though, we managed without for about 6days then she started straining and turning purple at feeds and meals and pulling away and moaning all day. Been told not to take her off it until she's 2. I have noticed that since starting back on it we have a 5am wake up again, I'm sure it must be the LOSEC as it went away when we stopped! I've been doing some reading and apparently it can cause insomnia so I'm going to give it in the morning instead of evening now and see if it helps! xx

 

[loz27]

also gonna ask about swapping feed to aptamil comfort from SMA1 would you recommend it?

I swapped from aptamil first to aptamil comfort & it really does help ~ She has been on it since she was about 5 weeks old now Sometimes you have to experiment with teat sizes, as its slightly thicker than the normal milks

Good luck

Ohhhh, just to add ~ Dont think you would use gaviscon with the comfort But dont quote me on that, as DD never had gaviscon (she had other meds)

Agree with Kelly - have read lots of times that ur not supposed to use gaviscon with comfort milk cos it's already thicker (maybe a choking hazard??). We dont use gaviscon anymore cos dint help, but were using 9 sachets a day while she was still really little on paeds advice. Can also prescribe lactulose to help with constipation - makes a real difference - n we jst use

as needed rather than all the time x

hi,

i rang aptamil up to ask about the comfort with gaviscon and they told me its absolutely fine as there is no thickners in it. doc said it was fine too.
tbh i dont think its really thick as i use variflow teats and they are still a bit too fast.
ive just give my lo a feed with just the comfort and hes been bringing it back up so im guessing the thicness with the gaviscon is helping him keep it down
i might have to go down the lactulose route thou as the constipation still hasnt improved after several weeks x

 

[stardust599]

Comfort and Gaviscon is fine, you can't use Gaviscon with SMA Staydown or Enfamil AR though as these already have thickeners in them.

Now I'm confused, been back on LOSEC 3days and Macy seems to be worse. She's really sicky and grunts, groans, strains and arches her back every feed. Don't know what's going on! xx

 

[gilz82]

Hi girls :wave:

Short version is my son Noah has severe reflux. He was born over 6 weeks early and his reflux has just gotten progressively worse.

We've tried gaviscon, ranitidine and domperidone. He's now on Enfamil AR, domperidone 2.3ml x 4 and started omeprazole 9 days ago at a 12mg dose.

Enfamil started about 2 months ago and it really helped reduce the amount of sickness we get, ranitidine and domperidone did help to start with but after 6 weeks he started to refuse feeds after always having been a reflux comfort eater. Paediatrician started omeprazole. We had the loses mups for the first 5 days and then we got the liquid omeprazole. I can honestly say I don't think he's any better.

I'm fighting to get him to take 20oz a day after him taking 36oz for weeks and as soon as he eats during the night he starts screaming and arching his back and I can't get him to go back down.

I keep hearing that omeprazole takes 10 days to start working and by 14 days it should make a massive differnence. Is this actually true and should I keep persevering or be pushing to go back to paeds??

 

[KellyC75]

Im sorry I cant help with the question

But wanted to send to you & little Noah

 

[gilz82]

Thank you very much Kelly

 

[stephybump2be]

Comfort and Gaviscon is fine, you can't use Gaviscon with SMA Staydown or Enfamil AR though as these already have thickeners in them.

Now I'm confused, been back on LOSEC 3days and Macy seems to be worse. She's really sicky and grunts, groans, strains and arches her back every feed. Don't know what's going on! xx

Poor Macy, Can take a while to 'kick in' - should be noticing a difference around day5. Can take a bit longer if the acids damaged her tummy lining a bit as she'll still be sore until it heals up.

Steph x

p.s. Jst read 'comfort' and thought it was Cow&Gate Comfort (which you can't use gaviscon with), Sorry!

 

[stephybump2be]

Kelly, not been on here for ages - hows the reflux goin now? Hope things are better x

Hiya ~ Thanks for asking My DD reflux is alot better now, however I am keeping her on the meds for now

Hows your LO?

Still struggling with the reflux Tried dropping her dose, not a success so she back on 20mg a day
I would also like to say 'I hate weaning puke' it sucks!

Oh dear ~ I was hoping that as you hadnt been on here for a while, Nim was doing better

Cheers huni, Sophie nrly 9mths now and things are WAY better . Still has some off days and been terrible today 'cos i ate a couple of spoons of the wrong cereal (with cows milk in), yesterday . It's amazin having a 'real' baby rather than one that only screams, eats n sleeps. So glad things are better for you too x

 

[stephybump2be]

Hi girls :wave:

Short version is my son Noah has severe reflux. He was born over 6 weeks early and his reflux has just gotten progressively worse.

We've tried gaviscon, ranitidine and domperidone. He's now on Enfamil AR, domperidone 2.3ml x 4 and started omeprazole 9 days ago at a 12mg dose.

Enfamil started about 2 months ago and it really helped reduce the amount of sickness we get, ranitidine and domperidone did help to start with but after 6 weeks he started to refuse feeds after always having been a reflux comfort eater. Paediatrician started omeprazole. We had the loses mups for the first 5 days and then we got the liquid omeprazole. I can honestly say I don't think he's any better.

I'm fighting to get him to take 20oz a day after him taking 36oz for weeks and as soon as he eats during the night he starts screaming and arching his back and I can't get him to go back down.

I keep hearing that omeprazole takes 10 days to start working and by 14 days it should make a massive differnence. Is this actually true and should I keep persevering or be pushing to go back to paeds??

Poor Noah
reflux tends to peak at around 4mths and dont give up on the Losec yet!! The info you have isn't wrong, but it depends how much damage the acid has caused to his tummy lining - he'll still b sore until any damage heals (this could be a few weeks.

Also, the liquid form of omeprazole is quite unstable and starts to lose potency quite quickly, also check whether the Losec dose might be a bit low for his weight, (and remember it will need increasing every couple of weeks in line with his weight gain). Have a look here: https://www.refluxrebels.com/Acid_reflux/Acid_reflux_medication.html (can also check reflux and dairy intolerance info on here)

Is he bf or what ff are you using? He may have an intolerance to cows milk protien (the most common allergy in babies), and a big sign is mucous in the pooh. If bf you can go on a dairy free diet (see: https://www.kellymom.com/babyconcerns/food-sensitivity.html). If ff you can get either 'hydrolysed' formula or 'amino acid' formula.

My dd has dairy intolerance (CMPI cows milk protien intolerance; MSPI milk soya protien intolerance). I was VERY suspicious of cutting out dairy, but 10 days later the resulta were amazing!

Don't despair, the omeprazole and domperidone will defo help, and even cutting out the obvious dairy from your diet could make a big impact. Your on the right road so things should start getting better for you very soon.

steph x

 

[KellyC75]

Kelly, not been on here for ages - hows the reflux goin now? Hope things are better x

Hiya ~ Thanks for asking My DD reflux is alot better now, however I am keeping her on the meds for now

Hows your LO?

Still struggling with the reflux Tried dropping her dose, not a success so she back on 20mg a day
I would also like to say 'I hate weaning puke' it sucks!

Oh dear ~ I was hoping that as you hadnt been on here for a while, Nim was doing better

Cheers huni, Sophie nrly 9mths now and things are WAY better . Still has some off days and been terrible today 'cos i ate a couple of spoons of the wrong cereal (with cows milk in), yesterday . It's amazin having a 'real' baby rather than one that only screams, eats n sleeps. So glad things are better for you too x

Thats fantastic ~ Im so pleased for you & your LO....Its a long tough road isnt it

Im just praying that this next LO doesnt suffer from reflux

 

[gilz82]

Thanks Steph. Noah is formula fed and he's on a prescription formula called Enfamil AR. It has made a brilliant difference in that he's only sick mouthfuls now rather than whole bottles back at you exorcist style. I don't thin he has any intolerances or allergies his poop has always been normal.

The past few days he has started being sick mouthfuls of watery milk much more frequently and I dont know if it's the increases dosage of domperidone that is causing the problem or if it's the omeprazole It's very strange because regardless of how long it is since he ate the sick is very watery where in previous weeks if he was sick more than 40 minutes after eating for example it was starting to get lumpy.

 

[stardust599]

Thanks Steph. Noah is formula fed and he's on a prescription formula called Enfamil AR. It has made a brilliant difference in that he's only sick mouthfuls now rather than whole bottles back at you exorcist style. I don't thin he has any intolerances or allergies his poop has always been normal.

The past few days he has started being sick mouthfuls of watery milk much more frequently and I dont know if it's the increases dosage of domperidone that is causing the problem or if it's the omeprazole It's very strange because regardless of how long it is since he ate the sick is very watery where in previous weeks if he was sick more than 40 minutes after eating for example it was starting to get lumpy.

Just jumping in here. It'll be more watery because the Enfamil AR is designed to stay in the stomach - so basically the powder stays like a gel in the stomach but it can't keep hold of all the water so when he vomits it's just the acidy water coming back up - it can make it more uncomfortable for reflux babies so he might actually be more comfortable on a normal milk as even though he'll projectile vomit more the milk will neautralise the acid and make it less sore.

What dose is the omeprazole?

xx

 

[gilz82]

He's on 12mg of omeprazole once per day. I understand what you are saying about the Enfamil but he's been on it for over 6 weeks now and the watery sick has only started the past few days.

 

[stephybump2be]

I'd visit A&E at the hospital where you saw the paed if possible. I'd agree with stardust that this sounds like acid coming back up, and it would follow that the omeprazole dose isn't strong enough - even after 9days ur LO may have had a big weight gain, (and the hospital actually doubled Sophies dose over the telephone once). 12mg is a decent dose (sometimes they prescribe ridiculously small amounts), but ncreasing to 12.5/13mg might make a world of difference to Noah!

My LO is currently on a much higher dose than is normally prescribed (50mg p/day @ 8kg), but I did lots of research and passed this on to my paed - I'm lucky he's so open minded. I increased her dose gradually during the 9wks between appointments with her original paed, b4 her 1st appt with a specialist paed at Yorkhill Childrens Hospital. Luckily he really listened and believed that I was able to recognise the symptoms that happened each time her meds started getting low for her weight, and accepted that it was working for her. If the meds continue to creep up, he wants to do an endoscope to check theres nothing else that could be contributing. I'm defo not advising you to increase dose yourself, but be on the ball, check Noah's weight (if you phone the HV she should come out and check it for you), and ask for a revised dose. Defo have a read her to gen you up on things a bit more www.marci-kids.com.

You could also try splitting the dose into 1/2 morning and 1/2 evening, and going back to the mups. If you decide to use mups ask on here for some tips on giving it.

fingers x for a big improvement soon x

 

[gilz82]

Thankfully it was our gp who prescribed the omeprazole as our paeds consultant was on holiday. It was done in line with what the consultant wanted but if he'd prescribed it I bet he would have starte us on the minimum 0.7mg per kg dose for Noah as that's how he's prescribed everything else.

Thanks for the link I'll look at that later when I get a chance as we had another horrendous night here so I'm totally exhausted.

When we had discussed giving omeprazole with the consultant he told me not to split the dose as it's not effective, I wonder if he's talking rubbish as I don't have a huge amount of faith in him. He doesn't particularly take reflux seriously and at one point told me to just feed Noah everytime he was screaming and arching his back as it was just hunger. He took over 40oz one day when he was only 5weeks old, 90% of it pukes directly back over me.

As for the mups I hate them. I can't seem to get enough into Noah. If you mix it in a syringe the little balls stick to the syringe and you can't get them out, of you mix it in a medicine cup the balls stick to that and you can't get them out. The gp stressed tha the balls are the actual medicine part so I was really thankful to leave them behind but if they are more effective than the liquid we might have to try again.

I dont want to sound nosey but were you transfered to Yorkhill purely because your daughters reflux is so severe or did you request it? I have been trying to find a private paediatrician or gastroenterologist to take Noah to so that the reflux is taken seriously and dealt with properly. It would take all my savings to do it but I'd quite happily do it as in his three and half months of life the only time he hasn't screamed for a large portion of the day or night is the three weeks he spent in neonatal and that's because they tool the reflux seriously.

Apologies if that post is rambley, it's just me and Noah at home, my OH works away long term, so that lack of sleep is starting to affect my brain

 

[KellyC75]

Apologies if that post is rambley, it's just me and Noah at home, my OH works away long term, so that lack of sleep is starting to affect my brain

Sometimes, only others that have a reflux baby can really understand

Its good to talk

 

[gilz82]

Thanks Kelly it really does make a difference talking to people who understand. Other than my OH even our own families don't get it regardless of how many times we try to explain. They still think reflux just means Noah is a pukey baby. It gets so frustrating trying to explain that sickness is just a symptom the cause is something completely different, so I don't bother anymore

Phoned my gp this morning as he's my liason while our paediatrician is on holiday to say how long are we supposed to wait before expecting the omeprazole to make a difference. He told me to bring Noah straight in and took one look at him having a lovely watery acid puke and doubled the dosage to the maximum 20mg per day. I can only hope that makes a difference.