All new deluxe reflux support thread

[buttonmoon78]

Welcome one and all!

Hi all,
So pleased to have found this thread.
Will cut a very long story short for you all:
Jamie is 15wks and has a floppy larynx and reflux, he started on Gaviscon and then onto Domerperidone and Ranitidine, then taken off ranitidine and put on domeridone and omeprozole and now since Wednesday he is now on domerpidone and lansomeprozole. Consultant increased his domperidone dose on Wed also.
We were also told to wean early to help with the reflux.
His milk intake is very poor hence the weaning.
My problem now is since Friday he has screamed and screamed which is completly unheard of as he is normally so happy and giggly.
I have jsut read on a board that a little baby also started screaming after domperidone dose was increased as it can cause stomach cramps - is this true? He was on 2.6ml x 4 a day and now increased to 2.6ml. Lansomeprozole is 1.17ml x 2 a day.
I am at a complete loss as to what the issue is at the mo and have spent all weekend in tears as nothing seems to console him.
xxxx

dont feel i am entitled to be in this thread anymore. went to see paediatrician on friday. he told me that it is unlikely my baby has got silent reflux as it is VERY rare in normal babies! told me it was likely colic. when i asked him why the gaviscon made it better and why it was getting worse and not better at 17 weeks he didnt really answer but told me to continue the gaviscon. he also said that i shouldnt feed baby overnight and just check on her but not pick her up.
have decided to continue on gaviscon as does make her much better and try to get her onto a routine to see if things improve.
i couldnt believe he said that reflux was rare! i nearly told him he needs to go onto mumsnet and see how rare it was but kept my mouth shut. my baby may not be losing weight and he proabably wouldnt find grade 4 oesophagitis if he looked down her throat but it is clearly upsetting her everytime she feeds and if she lies on her back too long, never mind the screaming sessions (which have settled with gaviscon).
he also made out she was waking up for comfort from me. dont know why you would wake up for a cuddle from your mummy and then decide to cry the whole time!
have decided to give up on finding a resolution for this and just try to keep going till it gets better. having read lots of posts i know my baby is no where near as bad as others
jan2011 it is true about soy milk. a proportion of children who are cows milk protein intolerant also react to soy. in terms of strictness of diet i have heard you have to be incredibly strict. i suspect oyu may be very strict initially unitl things settle and that way you know for sure if she is unsettled it is not becuase there is no CMP getting through. if she settles then you could slowly re introduce things.

Personally ekkie I'd be asking for a second opinion. All the paeds I've ever encountered say reflux is under rather than overdiagnosed. Was this a paed with specialism in gastro-enterology? I only ask as the first paed we had contact with this time said (without examining ds or speaking to me) that it was not reflux but was over feeding The fact that he was in pain was not worth addressing as he was continuing to gain weight Our GE paed said he was an idiot!

As for refusing to feed or pick up a 17wk old baby at night Why would someone do that?

I hope you don't think I'm being ott - but I really would ask for a second opinion from a paed with a gastro-enterology specialism.

sarge he's 17wks. Thank you for being lovely. The w/e wasn't too bad as dh was there all the time to help with him. And he's home 2 nights this week which will help. I think I'm goig to limp on til Thursday and see what the paed says. In the absence og a magic wand I'll then go to see my gp.

Had a lovely day yesterday leading me to question if it was really reflux.

Today? Oh, I'm in no doubt. He's not stopped screaming since 10.

Oh goodness, no offence, but I really don't want to join this thread, but room for another one?
DD is currently one week before her due date, but was born at 27 weeks +3, so 12 weeks old, and we've had a long road already. However she's a fighter, was only on a ventilator for four days, and has endured brain scans, lumbar punctures, more blood tests than anyone should have at her tiny age, but scrapped onwards ever since. She began on TPN, then on a mix of formula and breast milk, but somehow I managed to express milk every two hours for the 9 weeks she was in the NICU so I have a supply to feed her with and she's a fab feeder (or was), however she's on the second centile so is pretty dinky to start with so we don't have much wriggle room.... and now I think she's heading towards reflux. DS was v colicky to start with and a prolific spitter, but she's doing things I've never seen him do before. From initially feeding well she now squirms, grunts, huffs and writhes during feeds. She has stinky wind, and loud burps. She also gets v snuffly and congested which makes me think its going up her nose and although she is not sick v much, I think she's often sick up her throat or mouth. And worrying when that happens she holds her breath (just like her bad old apnea days) and goes v still, until I touch her or blow into her face, when she starts gasping like a wee fish. Horrid. Plus she goes on feeding marathons that last 4 hours or so from around 11pm at night. Last night we coslept for four hours or so after i wasn't able to put her down from 9pm til 2am... I did this with DS after he was 7 months or so. But he was born a 9lber. DD was born 2lb 4ozes, and is currently just under 6lbs, sleeping with her is terrifying.
Anyway after my long waffle, I have my HV coming tomorrow as part of her weekly weigh ins, and an appointment with her paediatrician as part of her history in the NICU, what should I be asking these people? What are the best meds - and what are the differences? What should I be doing to my diet? Please help. After all our stress with the early days I wasn't expecting this battle too.

Hi there....my little one also has reflux -we're on Renitadine 3times per day by peods...

Doesn't seem to do too much but we just want to try to help her. The speech and language therapist at UCLH advised us to treat her like a bottle of milk with the lid off. ie. keep her upright 20mins after a feed and be very careful when winding her.

We're practicing the Gina ford routine and she sleeps v.well after two bottle feeds at 1 @ 7pm and the other @10.30....they're a mixture of EBM and formular my hubby does it whilst I sleep.

It all goes pete tong at 2.30 when I feed her and we end up feeding winding and trying to go down until 5am!! tis driving me crazy so we're just going to try and figure something out think its to do with the breast feeding as she takes ages to wake up. so we might just leave her and see when she wakes up naturally!!

Ant thoughts would love to know........L x

Can I join too please as I feel I am going crazy with worry/lack of sleep!

My baby is almost 7 weeks old and has a reflux. GP diagnosed it last Thursday and prescribed infant gaviscon. He doesn't puke a lot but just starts to eat and takes some food and then starts screaming and arching his back/gulping and that's it. He is bottle fed on Aptamil. On top of this I think gavison has made him constipated so he is constantly scrunched up and straining.. Feeding has become very stressful for me and him now as I am so worried about it. He is putting on weight and I feel that no gp will be concerned as long as the weight goes up. He also develops this flemmy thing in his tube while feeding and gets all hoarse almost like the acid is in his throat. If he happens to get upset at the same time he can not swallow his own saliva and therefore we have had a couple of episodes where he kind of can't breathe for a few seconds. I have phoned NHS direct and they've sent me to out of hours gp on Friday night but all they keep telling me is that this is normal.

Does anyone have any advice as I am struggling so much and constantly on the edge and crying. I feel that I will develop pnd if this carries on as I cannot see a way out and am so worried about my baby?

Hi Bubalie, my baby sounded like an old man with a cough very plemmy at about 7weeks. she is now almost 11 weeks and that seems to have gone, she just bring up breast milk, whilst she's still on the boob and vomits quite often.

Sometimes I think it might be stress related as it gets worse when lots of distractions are happening.

LEBG

BTW it does seem distressing when your baby vomits, but I don't think it corses them pain - its just upsetting for us. My breast milk is precious and it saddens me when she voms it up and i have to top her up with formular.

She has v.poor weight gain so had te eat eat eat.......

Aaargh - just typed a long message and then MN lost it! Will try to remember the gist...

poppet explain your concerns and see what the paed says. The normal treatment path (IME) is non-medicinal ie propping etc, then gaviscon, then G with ranitidine and then the heavier drugs. I hope they listen to you.

Lucy how old is your dd? I've not bf a refluxy baby beyond 10wks. Routine will never happen with ds. He's so busy sicking up milk that he's hungry long before he 'should' be!

Bubalie the constipation might sort itself out. If not, it might be worth knowing that my ds was the same with gaviscon & C&G but fine with gaviscon & Aptamil.

Please, please speak to your gp and explain how much this is upsetting you. I'm having a good day today but if you read above posts you'll see that bad days make me sound like I'd be better off speaking to the Samaritans rather than posting here. And I'm not trying to be funny. Do you have any family help? Even an hour or so every few days away from the crying can really help.

I'm also in the position where ds is gaining weight still. DD1 had it so badly she was hospitalised for FTT - very unwell, yet never had a day's bother with it. DS2 however is gaining weight and yet is bothered by it all the damn time! I really had to fight to get him seen let alone diagnosed. Looking back, I think his weight gain was tailing off before we went dairy free, but he's thriving again now.

Please none of you underestimate how much this can affect you and these precious early days with your baby. It's tough, we all know

But we're all here and we all help eachother through it.

Hi everyone - I have been through this with my daughter and just wanted to offer my support as this thread popped up on "active" and it has taken me right back to how it was with her!

She is now nearly two and finally over it all. But she had an awful time when she was born. She was constantly sick and screaming in pain when feeding (BF one week, horrendous thrush plus she wasn't really latching at all, expressed for 3 weeks then formula, and that was when the problems started), gulping but coming off and screaming, writhing around , pulling legs up etc. She would take an hour to eat a 2/3 oz bottle and could never take more than 3oz for ages. Didn't like being put down.

HV dismissed it as "colic", GP was sceptical and suggested Gaviscon, then after that didn't work (and she got massively constipated) Ranitadine. I tried loads of formulas too. Ranitadine didn't work so at 9 weeks and in desperation I took her to a private paed and he took one look at her, listened to me and diagnosed a cow's milk protein intolerance and fairly bad reflux. She was immediately put onto neocate which she puked up terribly for the first day (system getting used to it I assume) but was instantly a different child. A week later we went back to see him and though she was much better she wasn't totally normal so he prescribed omeprazole (1mg per kilo I think) which worked. He also gave us domperidone but tbh I didn't find it made much difference to her puking and as she was gaining weight I wasn't worried about that. So I stopped giving her that as I felt that she didn't need it so I didn't want to give her more drugs than she needed if you see what I mean.

Anyway she was on neocate until 11 months when the GP (a different one) just stopped prescribing it as I hadn't taken her to the paed recently so there was no indication she still needed it and so I though she was nearly 1 ans we'd try normal formula. Nope. Awful - d&v. Tried soya too but it seemed sh was also intolerant to that as is common. (Interestingly she could tolerate a soya yoghurt - I am told that is broken down even more than formula as processed etc). So back onto neocate until she was 18 months and we tried again. She was a bit funny in the poo department for a few weeks but her system obv then adjusted and could tolerate it. So she eats everything though and loves milk!

Now I know this is all very anecdotal but I just wanted to share my story and if I can help in any way just ask. It's so hard when the HP just think you are being paranoid and it wears you down. It's such an unpleasant thing and had me in tears many times. I sometimes feel like her first few months were a bit tainted by it all (and at 11 weeks we found out she had a dislocated hip so needed 2 ops and a waist to feet cast for 12 weeks + brace afterwards but that's a different story ). I would just say trust your instincts and keep pushing if you aren't getting the help you need. And well done all of you - it's bloody tough.

Hi everyone , my ds is 9 months old and was diagnosed with cows milk intolerance and silent reflux at 12 weeks, I have to say it's the hardest thing I have ever had to deal with, he was put on neocate with carobel thickener and 3mls ranitidine per day, this worked wonders and his reflux dissapeared, at his last paed appt 1 month ago we were told to gradually take him off ranitidine and carobel thickener as he had prob grown out of it, he seemed fine for about 2 weeks although he had an acid smell off his breath but didn't seem unsettled or in pain, all week he has been up during the night really unsettled, arching his back , screaming for around 1 hr, last night it just clicked that this is reflux again! His wee voice is all hoarse today, feel so annoyed with myself that I didnt see the signs sooner, phoned doc today who has advised me to put him back on the full dose ranitidine again, :( I really thought he would have grown out of it by now, back when he was a tiny baby I posted on here for advice etc , i don't know where I'd be without the Internet!

Well.... a 3 hour appt with the paed

Upshot is we're sticking with ranitidine, although doubling his dose to 7.5mg x 1ml x 3 daily. We're also introducing domperidone. And once we've been on domperidone for a week we're to restart weaning, and we saw the dietician for advice about that.

She was so lovely. I'd been so geared up for a bit of a scrap and turns out she was so nice that I cried with relief

Of course, as I predicted, it was Dr Jekyll who came with me today - all smiles for all the nurses, drs, dietician, other patients and their parents etc!

I know we're not out of the woods, but to finally feel as though we're being taken really seriously was lovely. She said that if it was up to her she'd be prescribing cleaners, childcare and massages to mums of reflux babies. Dr Piggot for Prime Minister - that's what I say!

hey guys, so sorry for all your pain. Bubalie i am sorry you are so upset and ur LO is suffering so much I hope you both get relief soon. I feel i have a different baby now - i had to try 3 different meds for her before ranitidine worked, 3 times a day, plus i gave up cows milk and most diary last week and have had great results (thanks for advice ekkie) i am loving coconut milk, rice and soy milks! In general she is much more content. i also always keep her upright most of the time even in the pram, especially after feeds. i sometimes take her into the bath and feed her there and that seems to soothe her and be easier for her. please don't lose hope change can be just round the corner, if something doesn't work, keep trying different things.
the only problem is my milk supply has just crashed i think due to stress but thats another thread...

Thank you so much everyone for your words of encouragement. We went to see private paed last night and he has advised to stick with gaviscon and has prescribed ranitidine I think I just need to go and collect the prescription from gp this morning for this (I think it's ranitidine). He has told me to give it to my baby twice a day and continue with gaviscon and see if that makes a change. Has this combination worked for anyone before? I am so hopeful that this will help, although he said that it may take up to two weeks for the meds to work!! :(. Also you know this flemmy, hoarse like breathing which really scares me - does that improve with the meds, I think I could cope with a lot of things but when I think he's struggling breathing that is what freaks me out?

I am so glad I found this thread, please any advice you have share I will try anything. Thank you :)

buttonmoon your doctor sounds lovely. she sounds like she really understands how awful it is to have a reflux baby.

we have had a good few days after increasing her gaviscon and putting her onto a strict routine.
despite appointment with paeds not going well, i still know she has silent reflux and doing all the usual sitting up, propping up crib and i think it is keeping things settled.
studpily tried to reduce gavsocn in yesterday's bottle and she faffed so much. how stupid am i?
anyway, when things improve life really does seem easy after the awfulness of reflux crying and feeding.

ekkie not stupid - just eternally optimistic

bubalie that medical regime worked for dd1 and she was mighty poorly so hopefully it will with yours too. You should see some benefit straight away - the delay might occur if there's damage to the oesophegus which might need to heal.

Off to pick up our domperidone shortly...

Hi all, thanks so much for the support and words of wisdom from the battle hardened. Just to let you know Willow is now on Ranitadine and Domperidone and we've already seen a massive, massive improvement. We were told to give it a week, and if not better to double the dose of the DOmperidone, and then give it another week and if not better they would give her Ompraz...something. I think because she's so wee, they decided to not mess about. I'm also off dairy for two weeks. Then I'll reintroduce it and see what happens, although I think this case is physical rather than an intolerance as she's been on milk in one form or another for 11 weeks now and this is the first problem we've had. We were also given the option of sticking with the Gaviscon too, but have ditched it as its a mare to get into her as she's now EBF. However we're dealing with an unwanted legacy from it - DD is totally constipated! Argh a new reason for sleep deprivation. Anyone have any tips for relieving that? She was up from 1 til 3.40 last night with it.... as well as feeding at 11 and 5.30 and 7am. Gotta love those premmies and their two hourly feeding needs! Wishing everyone sleep and happy smilely babies.

after a week of getting on track, dd suddenly decided she cannot drink more than 3-4oz at a time again. had been drinking 6-7oz bottles really nicely 9not in one go but we had a system going). nothing changed apart from in laws came and messed up my routine! now going to spend another week getting her back on track.
the paediatrician said i could call him if she didnt improve and he would prescribe ranitidine (even though he doesnt think it is SR but says he is happy to try since ranitiidne is very safe). dont know whether to call him or not. dont want to sound stupid.
oh i hate this. i had grand plans of cleaning my house and meeting some friends this week after things seemed settled last week. oh well. will have to live in mess for another week.