Reflux Help & Support Thread

[Tegans Mama]

I have been told twice now (by chemist and HV) to go back to the doctors about getting something other than gaviscon as the sickness is till bad so it clearly isn't working. But Evan is gaining weight. Yet how can a doctor leave him having painful attacks during the day if something like ranitidine could potentially stop that.

I have no idea what my new docs are like as I only ever saw the mw when I was pregnant. My old doc was fab re the reflux and very supportive.

If they don't help I might go to mums and temp register him again and see the doctor, beg for something else and then go back to my normal doctor.

Evans sick is like milky slime sometimes is that what you been by mucusy? He was a section baby and still gags at times and brings it up (but not often) He's sicked every type of milky sick going

Also it affects his sleep. He settles so well but has woken twice since 9 screaming in pain.

Tegan had/has quite bad reflux. She isn't sick quite so much anymore but is still sick sometimes. When she was small (under 18months) her sick was slimy and sometimes a bit like jelly? And smelt really bad. She had loads of different meds but nothing really helped. It was a case of just dealing with it She was often sick at night whilst she was asleep, for this reason she was in our room (mostly in our bed) until 10 months. After that she was sick a bit less.

You really need to get on your doctors back and keep going and going and going and complaining until they help you. YOU know your child best, it really is just a case of fighting his corner.

 

[Tegans Mama]

Hey, we're already under a consultant paediatrician but he's awful. I think they're going to push for the NG tube feeding when I go back on Monday as her milk intake is really poor still - approx 1-2oz every 3-4 hours and he wanted her to gain 200grams by Monday or be tube fed. That's impossible on the amount of milk she's taking.

She hasn't been grumpy at all today, she doesn't scream when she's being fed anymore but just refuses to drink it in the first place. I think she's worked out that it hurts so just refuses altogether now. She'll take a few sucks (maybe a half ounce, I think just enough to satisfy the hunger pangs) and then pull away fussing and grumping, if I gently keep the teat in the mouth and try to tempt her with it she just chews it or sucks it like a dummy for a min and then screams if I keep encouraging her or if I squeeze a little onto her tongue.

Not sure how I can encourage her as today she hasn't really seemed in any pain from the reflux and has slept well but she just never seems hungry and isn't interested, I think her little tummy is used to being empty now.

I don't want her to be tube fed, I'd rather we work out something to either get her to take more milk or add more calories and nutrients to the milk she does take.
xx

As far as tube feeding goes, my LO was tube fed for about 4 weeks and would sick up the tube feed Have you tried giving her milk on a syringe or a spoon? We had to get into a routine of feeding our LO 1oz of milk per hour in order to keep her weight on. She's had a loss of 3lbs in the last couple of months though so I am not sure what to do now!

 

[Farie]

Last night was ok but today's not been good she's on branded Losec now, it's really helping the burning I think as she's now much more a happy spitter, but the actual spittings getting worse.
She skins also flared up in what looks like the start of eczema, all over her face, back, arms and thighs and her poo is really mucusy and she has nasty acid burn type bum rash so despite the spitting getting better she's still unhappy.

I'm seriously considering neocate, I don't want to stop breastfeeding, I'm so damn proud if sticking with it, through the crap latch, lazy sucking, thrush, vasospasm - bit I cannot bare the thought that I'm contributing to her discomfort. I'm trying so hard to cut out the bad stuff, but I'm obviously failing as she's still not right.

Going to try and book her for allergy testing asap and work out whether avoiding her triggers is achievable

Sorry for the moany post, feeling very fragile today (and blaming the lack of sleep)

 

[stardust599]

Hey, we're already under a consultant paediatrician but he's awful. I think they're going to push for the NG tube feeding when I go back on Monday as her milk intake is really poor still - approx 1-2oz every 3-4 hours and he wanted her to gain 200grams by Monday or be tube fed. That's impossible on the amount of milk she's taking.

She hasn't been grumpy at all today, she doesn't scream when she's being fed anymore but just refuses to drink it in the first place. I think she's worked out that it hurts so just refuses altogether now. She'll take a few sucks (maybe a half ounce, I think just enough to satisfy the hunger pangs) and then pull away fussing and grumping, if I gently keep the teat in the mouth and try to tempt her with it she just chews it or sucks it like a dummy for a min and then screams if I keep encouraging her or if I squeeze a little onto her tongue.

Not sure how I can encourage her as today she hasn't really seemed in any pain from the reflux and has slept well but she just never seems hungry and isn't interested, I think her little tummy is used to being empty now.

I don't want her to be tube fed, I'd rather we work out something to either get her to take more milk or add more calories and nutrients to the milk she does take.
xx

As far as tube feeding goes, my LO was tube fed for about 4 weeks and would sick up the tube feed Have you tried giving her milk on a syringe or a spoon? We had to get into a routine of feeding our LO 1oz of milk per hour in order to keep her weight on. She's had a loss of 3lbs in the last couple of months though so I am not sure what to do now!

Did ur LO go back to bottle feeding okay after being tube fed? I'm starting to consider it now as yesterday milk intake was less than 18ounces and I offered her the bottle at every opportunity I got, I'm worried she'll start losing weight and isn't getting enough nutrients but I don't want to make things worse in the long run. I was thinking if they did go ahead with tube feeding maybe her little tummy would get used to holding more milk and it could help her feeds?

She's taking 2oz every three hours but really needs to be on a minimum of three. I didn't think of syringe feeding, in fact that's what I'll do today -

I'm going to let her drink her 2oz and then syringe feed her the extra ounce every 3hours. Will let you know how I get on.

I hope your LO starts to feel better and gain weight soon xx

 

[stardust599]

Last night was ok but today's not been good she's on branded Losec now, it's really helping the burning I think as she's now much more a happy spitter, but the actual spittings getting worse.
She skins also flared up in what looks like the start of eczema, all over her face, back, arms and thighs and her poo is really mucusy and she has nasty acid burn type bum rash so despite the spitting getting better she's still unhappy.

I'm seriously considering neocate, I don't want to stop breastfeeding, I'm so damn proud if sticking with it, through the crap latch, lazy sucking, thrush, vasospasm - bit I cannot bare the thought that I'm contributing to her discomfort. I'm trying so hard to cut out the bad stuff, but I'm obviously failing as she's still not right.

Going to try and book her for allergy testing asap and work out whether avoiding her triggers is achievable

Sorry for the moany post, feeling very fragile today (and blaming the lack of sleep)

Hey hun, you're doing so well with the breastfeeding but don't beat yourself up if you decide to make the switch, you're doing it for your LO.

Have you cut out dairy, soy, wheat, corn and nuts?

Macy is on Neocate as they thought she had an allergy but to be honest it's helped some symptoms (her skin, bowels and the pain after feeds) but the reflux is still so horrendous it's hard to really see a difference in her behaviour. It does sound like your LO has the allergy symptoms a lot worse than Macy though.
xxx

 

[SilasLove]

Madelyn did pretty good yesterday. Still tons of spit-up (of course) but overall she was happy. Like I have said - do believe she would hardly ever cry if not for reflux.

We got a lot of snow last night, right now we don't even have a car. So I can't make her a doctor's appt just yet. But once we get our car back, or snow melts a bit (whichever comes first) I am making the appt. Before that though, I need to figure out how to get to the stupid store to get diapers and wipes lol.

 

[bathbabe]

Harrisons just puked a jar of food on me I just couldnt be bothered with the mess of BLW i should of just stuck with the proper food!!!!!!!!!

 

[SilasLove]

Bathbabe - My Joseph had reflux issues - it was worse when he started eating regular food/jars of baby food. It smelled worse, looked worse etc. Its disgusting.

 

[stardust599]

Macy is having a good day so far too. 7.5 ounces from 3 feeds so far today, if we carry on at this rate we might beat yesterday's 18 ounces. My goal is to get her onto 24 ounces a day. Been trying to syringe feed her the extra bit of her bottle that she leaves but on the first bottle I spilt the milk and the second one my mother in law was in distracting and pestering her and I couldn't get her to pay enough attention to finish it.

Only 1 episode of screaming, after her first feed this morning then been happy and napped well all day.

Managed to projectile vomit her Omeprazole over my rug and herself today so I gave her an extra dose, not sure if you're supposed to but it'd only been down 5mins and she's doing so much better on the higher dose I'm scared to let her miss out on any of it

Hope everyone is having a good day (or as good as it gets with a reflux baby) xxx

 

[anna matronic]

Hey ladies, have had no sick today, apart from a bit after his lunchtime feed, but nothing more than a normal baby

He slept like a dream last night, woke every 3 hours for a fed, but went straight back to sleep after! Amazing how different the days can be isn't it!!?

 

[stardust599]

Hey ladies, have had no sick today, apart from a bit after his lunchtime feed, but nothing more than a normal baby

He slept like a dream last night, woke every 3 hours for a fed, but went straight back to sleep after! Amazing how different the days can be isn't it!!?

Yep, some days I have the perfect baby who eats and sleeps well and others I have this feral little monster.

She's mostly (6 out of 7 nights) a little angel at night though, feeds brilliant and then drops off to sleep xx

 

[Farie]

Awful night, 2h between feeds and when she did feed it was for a really short time
What's happened to my good sleeper? 10 days ago she was sleeping 4-5 hours, eating well etc. Now it's rare she goes 3h and is fussy and not taking much at all.

I'm rapidly getting more and more disheartened and considering neocate I so wanted to breastfeed, but the pain from the vasospasm, the dieting, her fussiness and feeding issues, it's all getting me down. I keep crying everytime I feed her cos I'm feeling so crap

 

[HelenFS]

Yuk. It's been a horrible day for me too. Constant screaming from Freya so much so that she has exhausted herself and is flat out on me now. It's so hard with Noah too. I can't wait to pick up the omeprezole tomorrow but a bit gutted I've got the suspension rather than tablets so I'm just praying it'll be just as effective.
Xxx

 

[Farie]

Hard day, awful unsettled feral baby. Poor DH left for work with me in tears and feeling so so low. Spoke to my m/w and even she is recommending looking into neocate or similar. Her opinion is I've dealt with enough, I need to enjoy my bub and only have the reflux to worry about, not the 10 other issues that surround feeding as well.

She's just so unhappy at the moment, her bum rash us worse, so are the eczema spots, she's vomiting 10x more than usual (the only silver lining to this is the losecs working and she smiles through most of the sick ups) and she's now fussing so much she's barely feeding for 10 mins so isn't getting enough, but won't stay latched etc for more, so isn't sleeping, and when she does it's so restless and jerky she wakes if I'm not holding her.

On Monday I'm booking her into the allergy clinic and I'm pumping and feeding bottles as much as I can as she feeds a little better from them. If needs be I'll combo feed until we get answers.

 

[stardust599]

Hard day, awful unsettled feral baby. Poor DH left for work with me in tears and feeling so so low. Spoke to my m/w and even she is recommending looking into neocate or similar. Her opinion is I've dealt with enough, I need to enjoy my bub and only have the reflux to worry about, not the 10 other issues that surround feeding as well.

She's just so unhappy at the moment, her bum rash us worse, so are the eczema spots, she's vomiting 10x more than usual (the only silver lining to this is the losecs working and she smiles through most of the sick ups) and she's now fussing so much she's barely feeding for 10 mins so isn't getting enough, but won't stay latched etc for more, so isn't sleeping, and when she does it's so restless and jerky she wakes if I'm not holding her.

On Monday I'm booking her into the allergy clinic and I'm pumping and feeding bottles as much as I can as she feeds a little better from them. If needs be I'll combo feed until we get answers.

Aww hun, do what's best for you and your LO. How about feeding Neocate just now but pumping the feeds so you don't lose your milk supply, if your going to see a difference you'll probably see it within 3 days. You sound like your having a really rough time, hope your okay xx

Macy had an awful night, didn't time it but up countless times (less than 20mins I think) needing to be resettled, very grumpy and a nightmare to take her feeds. I'm shattered this morning, I'm just too tired to deal with this. Has only had an ounce today. Thought we were getting better too, 21.5ounces yesterday which is one of her best but think today is going to be a 15-18ounces day again as she's really not up for eating today.

Paediatrician phoned yesterday and I've to take her to get weighed today, bit pointless as she was only weighed on Tuesday but I think the paediatrician is going to be pushing for the tube feeding if I can't get her milk intake up. Ahhh, I just want to give in, I'm so exhausted
xx

 

[HelenFS]

@Farie - I'm sorry it is so hard for you. I'm not remotely medical but it does sound as if your little one has allergies (I've had a lots of allergies all my life including bad eczema).I know it must be hard for you to stop BF but I think it is the way forward and you must not feel guilty.
Can I ask what dosage of losec your little one is on? I'm pleased to hear that this is working at relieving the pain as this is what my DD is going to be starting tonight.

As for us - really bad night before she went to sleep. Screaming and shouting in pain and so many tears She literally passed out through exhaustion at 11.30pm and is still asleep now so 11hrs so far without a feed. I feel so sorry for her.

xxx

 

[Samemka]

Hi ladies, I'm after some advice. Katie started on infant gaviscon on Wednesday & I really thought we'd cracked it. No screaming after feeds, an actual HAPPY baby who would lie/sit in her bouncer without crying, she was honestly like a different baby. I couldn't believe it.

However she's just had the most god awful screaming session ever after her bottle. I'm a nervous wreck. Whenever she screams I just go into a panic, it is so bad. No one expect Mummies of babies like this understand, I feel so alone.

The Dr prescribed gaviscon after I said I thought she had silent reflux (after dismissing the 'she screams blue murder during/after every feed' as 'some babies are just fussy'...f*ck off!) & told me if it wasn't doing any good after a week he'd make me an appt for four weeks time, so what am I meant to do for the three weeks inbetween if it wasn't?! Anyhow. If it is acid causing her pain, from what I've read she needs ranitidine. Do I just go to the Dr and ask for this? How long should I wait? (a different Dr mind, the one I saw last time has p*ssed me off something major)

I just need someone to understand that SOMETHING is hurting her. The screaming we just had was blood curdling in parts, I can't tell you how bad it sounds. I hate the Drs....it's like she's had a cold for 9 solid weeks, that cannot be right! They don't listen.

 

[bathbabe]

Hi ladies, I'm after some advice. Katie started on infant gaviscon on Wednesday & I really thought we'd cracked it. No screaming after feeds, an actual HAPPY baby who would lie/sit in her bouncer without crying, she was honestly like a different baby. I couldn't believe it.

However she's just had the most god awful screaming session ever after her bottle. I'm a nervous wreck. Whenever she screams I just go into a panic, it is so bad. No one expect Mummies of babies like this understand, I feel so alone.

The Dr prescribed gaviscon after I said I thought she had silent reflux (after dismissing the 'she screams blue murder during/after every feed' as 'some babies are just fussy'...f*ck off!) & told me if it wasn't doing any good after a week he'd make me an appt for four weeks time, so what am I meant to do for the three weeks inbetween if it wasn't?! Anyhow. If it is acid causing her pain, from what I've read she needs ranitidine. Do I just go to the Dr and ask for this? How long should I wait? (a different Dr mind, the one I saw last time has p*ssed me off something major)

I just need someone to understand that SOMETHING is hurting her. The screaming we just had was blood curdling in parts, I can't tell you how bad it sounds. I hate the Drs....it's like she's had a cold for 9 solid weeks, that cannot be right! They don't listen.

To get our Ranitidine - HV suggested it so i made an appointment with a Dr (not my usual Dr coz she pissed me off and said i was overfeeding him ) i basically went in and said the gaviscon is not working Iv heard about Ranitidine, can you prescribe it? he did there and then pot luck with Dr's, my own Dr had said that Gaviscon was the only thing available We now are under a paed and she is lovely

 

[Samemka]

Hi ladies, I'm after some advice. Katie started on infant gaviscon on Wednesday & I really thought we'd cracked it. No screaming after feeds, an actual HAPPY baby who would lie/sit in her bouncer without crying, she was honestly like a different baby. I couldn't believe it.

However she's just had the most god awful screaming session ever after her bottle. I'm a nervous wreck. Whenever she screams I just go into a panic, it is so bad. No one expect Mummies of babies like this understand, I feel so alone.

The Dr prescribed gaviscon after I said I thought she had silent reflux (after dismissing the 'she screams blue murder during/after every feed' as 'some babies are just fussy'...f*ck off!) & told me if it wasn't doing any good after a week he'd make me an appt for four weeks time, so what am I meant to do for the three weeks inbetween if it wasn't?! Anyhow. If it is acid causing her pain, from what I've read she needs ranitidine. Do I just go to the Dr and ask for this? How long should I wait? (a different Dr mind, the one I saw last time has p*ssed me off something major)

I just need someone to understand that SOMETHING is hurting her. The screaming we just had was blood curdling in parts, I can't tell you how bad it sounds. I hate the Drs....it's like she's had a cold for 9 solid weeks, that cannot be right! They don't listen.

To get our Ranitidine - HV suggested it so i made an appointment with a Dr (not my usual Dr coz she pissed me off and said i was overfeeding him ) i basically went in and said the gaviscon is not working Iv heard about Ranitidine, can you prescribe it? he did there and then pot luck with Dr's, my own Dr had said that Gaviscon was the only thing available We now are under a paed and she is lovely

Thank you. That's what I'll do then if we have another screaming attack like just because the gaviscon DEFINITELY made a difference so to me that suggests it IS silent reflux & that maybe sometimes acid is still coming up? I do feel like I was the one who told the Dr she had silent reflux rather than him suggesting it and it a way, maybe I am better going back to see the same one because much as he annoyed me saying some babies are just fussy, the moment I said silent reflux he agreed to prescribe gaviscon and in a way, I want the same to happen about ranitidine, rather than getting a Dr who dismisses it all together.

Although if anyone dared dismiss it or tell me it's colic or she's just fussy, I would near-KILL them!

 

[Farie]

Helen thank you Nims on 10mg 2x daily at the mo, but I'll be dropping it down to 1x daily as soon as she's more settled. Don't get me wrong, there's still plenty of sick, but she isn't screaming in pain now.

Sam - totally agree, just demand Ranitadene! Just go in tell the dr you've done the readearch and a H2 inhibitor like Ranitadene is the next logical step and you simply cannot have LO in such pain

Slightly better night, DH sent me to bed with Nim when she went down at 8.30 as I'm beat, she took an hour to settle but once she did we both slept till 12 when I did a dream feed and she slept till 3.30 Shes just drifting off now so back to bed for me!
The only thing I did different yesterday? No bread/pasta etc