Reflux Help & Support Thread

[Worrisome]

Just sharing this. Its one she just did. Lots of mucous.

https://sphotos.ak.fbcdn.net/hphotos-ak-ash1/hs762.ash1/165386_1828924245305_1306290029_2138095_2631426_n.jpg

Ah poor love thats just like Millies, sometimes it can just be the mucus as well.
When I say she has had a good day and only been sick twice, I mean proper reflux sick, she's sick loads but I dont class that as the reflux just possett

Was she a section baby Silas?

 

[SilasLove]

Nope hon, she was vaginal.

Yeah, its usually always got some kind of mucous, but when its like this I tend to gag a bit. Its all string and everything - makes my tummy turn. Can't imagine if I was letting it up.

Can you ladies explain to me your child's painful cries? Like how their body is, how they cry etc.

 

[Farie]

When Nim has an attack she goes ridged, thrashes, arches her back and her cry is high pitched and painful. She roots and bobs her head but when I lie her down to latch she gets extremely distressed, pulls off and screams, claws at her face, screams when held to burp etc

The only way to calm her is to hold her tight, tummy to tummy, head higher than bum and rock side to side while bum patting - it doesn't work immediately so I have to hold tight to stop the thrashing and ignore the deafening screams, but after a min or to it does settle her. Once she's calmer I try to get her to take a dummy as sucking reduces the acid and pushes it back down

 

[Worrisome]

Millie, looks manic, I know it sounds daft but her eyes look really wide, she arches her back and goes really rigid, sounds very raspy and cries but a painful cry, oh and thrashes and scratches herself. I swaddle her and lift her over my shoulder and do the shush pat that I learnt from the baby whisperer which is good for reflux.

You can also hear her when she is having an attack her breathing will get faster, so I try and do the swaddling when this happens to try and prevent the acid coming up.

 

[HelenFS]

Can I join you please?

My little girl Freya (10 weeks) has silent reflux which started at 3 weeks. We initially thought that it was colic but then her crying episodes spread to daytime and a pattern started to emerge that anything from straight after a bottle to 30 minutes afterwards she would start to scream, hiccup, gulp frequently, go rigid, neck flex (she appears to have lots of symptoms of sandifers), sticking tongue out etc. This continued to worsen to the point where every time she is awake she is crying.
We went to the GP at 6 weeks who straight away said reflux (young GP!) and prescribed gaviscon and ranitidine. Unfortunately this had no impact - in fact gaviscon made it worse (I've since found out that this is common with silent refluxers as thicker the milk the longer the burn). We went back and asked for a referral and luckily as we are in Bupa we got a private paed appt last week. He wanted to try different formulas first to rule out a cows milk allergy (family history) and said to do a trial on nutramigen for 48 hrs. She got worse! I managed to get hold of him today and he has now prescribed omeprezole and domperidone which I'll start her on tomorrow.
Freya is a twin and it is so difficult. I've noticed how far behind her brother she now is. She certainly doesn't have the same head control and, in fact, has developed a head tilt.
She constantly wants comforting (understandably) and wants carrying over my shoulder all the time. I feel so torn and desperately want something to work. I know you'll all understand!

Helen xxx

 

[charlotte-xo]

Can I join you please?

My little girl Freya (10 weeks) has silent reflux which started at 3 weeks. We initially thought that it was colic but then her crying episodes spread to daytime and a pattern started to emerge that anything from straight after a bottle to 30 minutes afterwards she would start to scream, hiccup, gulp frequently, go rigid, neck flex (she appears to have lots of symptoms of sandifers), sticking tongue out etc. This continued to worsen to the point where every time she is awake she is crying.
We went to the GP at 6 weeks who straight away said reflux (young GP!) and prescribed gaviscon and ranitidine. Unfortunately this had no impact - in fact gaviscon made it worse (I've since found out that this is common with silent refluxers as thicker the milk the longer the burn). We went back and asked for a referral and luckily as we are in Bupa we got a private paed appt last week. He wanted to try different formulas first to rule out a cows milk allergy (family history) and said to do a trial on nutramigen for 48 hrs. She got worse! I managed to get hold of him today and he has now prescribed omeprezole and domperidone which I'll start her on tomorrow.
Freya is a twin and it is so difficult. I've noticed how far behind her brother she now is. She certainly doesn't have the same head control and, in fact, has developed a head tilt.
She constantly wants comforting (understandably) and wants carrying over my shoulder all the time. I feel so torn and desperately want something to work. I know you'll all understand!

Helen xxx

alfies like this..just when i thought he was getting better on infant gaviscon it all started back up again..took him back to the doctors and he was no help what so ever!!
can i be really cheeky and ask how much is it to go private and was it more effective than going to the normal gp..i ask because im getting desperate now.. they wont pescribe medication not sure why but did you have to push to the medication..

i just dont know what to do anymore..

i hope your LO gets better soon

 

[HelenFS]

Hi hun,
I'm not sure how much the private appt was as we've not yet had the copy bill via BUPA but our excess was £100 anyway. Usually private appts. with consultants go from £90 upwards. I went for it because Freya is thriving (as she comfort eats rather than avoids at this stage) the wait for an NHS appointment was going to be 11 weeks. I wasn't prepared to run the risk of her getting oesophagitis and starting to refuse food. She is in agony with it already! The paediatrician was great and needed as beyond ranitidine our GP couldn't offer any more (and it's a surprise that they even offered ranitidine). We were told that for formula changes or next step medication we'd need secondary care so be under the care of a paed.
I hope Alfie gets better soon too.
xxx

 

[HelenFS]

Hi hun,
I'm not sure how much the private appt was as we've not yet had the copy bill via BUPA but our excess was £100 anyway. Usually private appts. with consultants go from £90 upwards. I went for it because Freya is thriving (as she comfort eats rather than avoids at this stage) the wait for an NHS appointment was going to be 11 weeks. I wasn't prepared to run the risk of her getting oesophagitis and starting to refuse food. She is in agony with it already! The paediatrician was great and needed as beyond ranitidine our GP couldn't offer any more (and it's a surprise that they even offered ranitidine). We were told that for formula changes or next step medication we'd need secondary care so be under the care of a paed.
I hope Alfie gets better soon too.
xxx

 

[aliss]

We are post-reflux, noticed a huge improvement after 6 months.

This was my little man for the first few months of his life. It was the worst experience ever. I wouldn't wish it upon any enemy. We were refused medications because he gained weight, so it was basically a waiting game.

He also had colic and chronic pain (24/7 crying) so the first 4 months of his life were just horrible, I had postnatal depression from it.

 

[Worrisome]

Can I join you please?

My little girl Freya (10 weeks) has silent reflux which started at 3 weeks. We initially thought that it was colic but then her crying episodes spread to daytime and a pattern started to emerge that anything from straight after a bottle to 30 minutes afterwards she would start to scream, hiccup, gulp frequently, go rigid, neck flex (she appears to have lots of symptoms of sandifers), sticking tongue out etc. This continued to worsen to the point where every time she is awake she is crying.
We went to the GP at 6 weeks who straight away said reflux (young GP!) and prescribed gaviscon and ranitidine. Unfortunately this had no impact - in fact gaviscon made it worse (I've since found out that this is common with silent refluxers as thicker the milk the longer the burn). We went back and asked for a referral and luckily as we are in Bupa we got a private paed appt last week. He wanted to try different formulas first to rule out a cows milk allergy (family history) and said to do a trial on nutramigen for 48 hrs. She got worse! I managed to get hold of him today and he has now prescribed omeprezole and domperidone which I'll start her on tomorrow.
Freya is a twin and it is so difficult. I've noticed how far behind her brother she now is. She certainly doesn't have the same head control and, in fact, has developed a head tilt.
She constantly wants comforting (understandably) and wants carrying over my shoulder all the time. I feel so torn and desperately want something to work. I know you'll all understand!

Helen xxx

finger crossed the meds work. I didnt know sticking their tongue out is a sign, Millie has been doing this lots

 

[AP]

Well, you can add me to tonights chuck up army!

So so hard, I feel drained every single time it happens

That's two nights in a row, I'm thinking of welcoming back mr Losec.....

 

[stardust599]

Oh girls, I've had such a bad day, I think I need a hug.

Macy has been uber grumpy today, has screamed most of the day and refused to eat or sleep. She's had 5ounces across the whole day.

Had appointment with the paediatrician today who was absolutely f***ing useless (sorry I never swear but I'm so upset).

First he weighed her and somehow figured out that she had gained 400g since the last time a couple of weeks ago. He then went out to tell me she couldn't have reflux as her weight gain was fantastic and kept saying it's just "the 100 day colic, she'll grow out of it in a couple of weeks". I practically begged him to increase the omeprazole as she's just not eating and he said "absolutely not, in fact I think we'll wean her off of it in a few weeks". Anyway after lots of arguing and perseverance the nurse finally worked out that she has actually only gained 80g (2.5ounce) in the past two weeks.

He then hummed and haad and decided that it wasn't satisfactory but still kept going on about colic (which it's not). Then decided that the solution was to admit her to hospital and tube feed her for 2 weeks to let her gain some weight. I will absolutely not let him tube feed her as that's not a solution, it might be short term fix to get her to gain some weight but I've done a lot of research and I know it's not the best thing for her and it'll be nearly impossible to get her off of tube feeding. At the moment she'll only eat when starving and if she realises that she doesn't have to take a bottle to relieve the hunger I think she might refuse altogether). Also the NG tube he was suggesting shouldn't be used for reflux babies (I've read every single research article I can find lol) as it can make the mouth/throat aversion worse and will also aggravate the stomach even more.

He eventually agreed to up the omeprazole(LOSEC) to 5mg (which isn't enough, I reckon she needs 10mg which seems to be the dose babies the same weight as Macy are started on) and we've to continue with the Neocate which I don't think is helping and I don't think she has a milk allergy. We've to go back on Monday and if she hasn't gained at least 200g she has to be tube fed She's also getting blood tests (not sure what for?) and an ultrasound to check her bowel which I'm sure is fine. He doesn't seem to believe that babies can have reflux without really being sick (Macy only spits up a few times a day and projectile vomits once or twice a day but the reflux is mainly silent).

I fed her in front of him and she actually wasn't too fussy (she took 1.5oz) and he went on about how we're not winding her properly etc. (we do it really gentle and take our time or she's horrendous) and he picked her up to wind her himself and patted her back which makes the reflux worse afterwards. Grrr. He then kept poking her stomach (which obviously makes her cry as her tummy is already uncomfortable) and kept saying "see - it's just colic, i'm aggravating it right now. She screamed after the feed which he ignored and kept calling me and OH by our first names and being really patronising. She was still screaming when we left (about 20mins after the feed) and he said "she still has wind" (she didn't).

In the end I couldn't speak to him because I had a lump in my throat and was going to cry if I said anything.

I know what she needs, a higher dose of omeprazole and until that works I want the thing they give to premature babies to add more calories and nutrients to the milk she's getting. I just wish he would listen.

On top of that I'm sure my OH is about to finish with me, it's a long story but he's been lying to me about things and today he told me that we're not working although I thought we'd been fine, he's also suggested I find a place of my own with Macy but I just can't do this on my own

xx

 

[anna matronic]

Sikas evan is just how fairie described her lo. High pitch scream, arches back literally have to restrain him to calm him down and jeep shoving the dummy in til he takes it!! He's fussy with his food and cries. Alot of the time he is a happy spitter though but it is constant throughout the day regardless if when or what he's had (breast or formula) also if he is playing on his playmat and gets a attack he coughs first as if he's trying to force the acid back down with saliva (like when we have heartburn) then u can almost count to the second when he will cry.

Evans weight gain has been ok though, he's following his line in his book, although not had him weighed for a month. I don't feel like he's gained as much as before. I'm takig him tomorrow and he should have gained around 3lbs going by previous gains but he doesn't feel like A 14lbs baby!!

Pharmacist also said he might not be pooin as much cos he's not got as much food to digest as he socks so much up. Didn't think of that!!

I took him to rhyme time and fed him in the library and like a pro he puked before I even had time to sit him up for a burp

 

[babyjiva]

stardust
get a new doctor! don't settle for that kind of treatment. while you're at it get a new OH too...two for one maybe

in all seriousness hugs hugs hugs

 

[Farie]

Stardust

 

[anna matronic]

Oh stardust that is awful my old doctor was very supportive now I have moved I'm worried about what the new doc will think

shit night here real grumpy pants on my hands!!!

 

[LuvBeinAMummy]

Just thought I would post up that last night we didn't have screaming and fighting on Kellans last bottle we did hav a few sicky moments prior to that (mainly over me one being a very phlegmy consistency)

I tried someones suggestion of sitting Kellan up while feeding him instead of laying him back in my arms and the wind was brought up quite well and as I said no screaming issues at his 10pm bottle

I have the HV coming in today so will be speaking to her as I'm still not sure if he has reflux or colic (he has symptoms of both ) I've not had this with my other boys so feel totally

 

[raquel1980]

Oh Stardust, you poor thing, like the other girls have said I think you need to find a new doctor! Sounds like you had a dreadful day yesterday, hope today is a little better x

 

[raquel1980]

Anyone got any views on the spacing of domperidone doses throughout the day? Hannah is on 1.3mls 4 times a day, I had been giving 20 mins before 4 of her feeds and missing 1 feed out but just realised that often that means there is only 3 hours between each dose and I wonder whether that's why she's sometimes worse in the evenings because she's overloaded with the meds?! Maybe I'm clutching at straws looking for a rational explanation for the nighttime crying but Hannah won't sleep till around 2am every night and then sleeps all day between feeds pretty much - then Max wakes up to be fed usually at 5am so I only get a couple of hours sleep....really getting to me now

 

[Lizzyxxx]

Stardust-so sorry to hear about your terrible day. You have the support here from us.
Also sorry to hear about you and OH.