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Mummies of babies with reflux on meds - Help!

30 replies

angel1976 · 26/10/2010 21:24

Hi,

Brief background: DS2 threw up every day for the first seven months of his life. When I say threw up, it's spew up every bit of his feed all over the sofa, carpet etc. It was at least once a day (but thank goodness only once a day iykwim). We suspected reflux but because it was only usually once a day, and he was putting on weight (very slowly but everyone told me not to worry!). At seven months old, he stopped and we thought our life would get easier. Hell no. He's also always had a very runny nose and a lot of 'congestion' on his chest. Also a chronic cough (mostly at night). Anyway, his cough got very bad (some nights, he would cough literally all night) and we got an appointment to see a specialist. At the same time, his weight gain pretty much plateaued so we got pretty concerned. A friend suggested that DS2 could have cow's milk protein intolerance so we put him on a diary-free diet and he seemed better for a month before the usual symptoms came back.

Specialist (pediatrician specialising in respirology) went through all the symptoms, sent DS2 for chest x-ray, which came out clear and diagnosed reflux. Put on domperidone and omeprazole. This was a month ago. Since then, DS2's sleep has completely deteriorated. What was bearable is now pretty much at breaking point for me. In the past, he might have an episode of chronic coughing but if we get past it, he would have a pretty good night. Now, he sleeps really well for the first bit of the night, starts coughing for a bit about midnight or not. The cough does seem to be going... However, at about 3/4am, he would wake up and scream, arching his back and cannot be comforted. He might then be persuaded back to sleeping but from then till 7am, it's bursts of him screaming and going back to sleep. It's just horrible. I am at breaking point. All this seems to have coincided with him starting his reflux meds. Can the meds be making him worse? I am so tempted to take him off the meds to see how he is without it. I am just so desperate! Help! :(

Ax

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mynewme · 27/10/2010 19:43

Hi, I'm not sure what age your ds is, but he sounds the same as ours who also had diagnosed reflux. I am still traumatised by our and ds experience of this in his first year of his life, so I feel your pain!
At age 1, roughly, he started coughing in the middle of the night til morning(and always gets worse if he is congested). We were back and forth at the GP who eventually started him on a reliever inhaler after we had tried cough meds, vapourisers etc in his room. The doc said his chest was clear but that the night time cough was a sign of asthma - though didn't officially diagnose it as they don't like to at that age as they can grow out of these symptoms. It really did work, and straightaway, but when we stopped it the cough came back so he is now on a preventer inhaler and his cough at night only happens if he has a cold, which doesn't seem to go away for weeks.

would it be worth asking your GP for a trial of a reliever inhaler to start with? - the GP assured me it was perfectly safe, not a steroid and would do less harm than the effects of a night time cough on ds.

Our ds didn't have the same meds as yours - it was ranitidine - and I don't remember if it affected his sleep - but surely if it was the reflux causing the cough the meds should be reducing that?
Maybe try new meds? or inhaler?
Good luck, I really hope you get a solution for ds and you can get back on track with sleep and family life.

angel1976 · 27/10/2010 20:37

mynewme Thanks for replying. DS2 is one year old next week and we keep hoping he will 'grow' out of it. It is the night-time cough that is driving me mad as it sounds like he is choking and I lie there wide awake and petrified! Can you tell me what reliever inhaler you have? DS2 has a 'clear' chest as well. I know the pediatrician won't touch an inhaler, he actually told me during the appointment that he doesn't think inhalers have a place in a baby's life. I might have to go back to my GP for this one. Is it something your DS has to use before bedtime? Can you talk me through it? Thanks!

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mynewme · 27/10/2010 21:23

Hello, have just gone to check, its ventolin 100mcg. Have to say ds hardly ever uses it now, as he is well managed on the preventer, though the dose goes up and down depending how he is, but even then its a low dose - the preventer is clenil modulate.
I think your paed's comments would not go down well with mum's whose babies have asthma! Its all very well for him to say but babies do get asthma, they just don't like to label them with it in case they grow out of it.
I really understand your worries as have spent many a similar night awake with ds. He would often cough til he vomited and I was so worried he'd choke on it while lying down. Afetr such a night we got an emergency appt with GP the next day as we simply couldn't go on any more this way. I was scared like you that something bad would happen. Possibly I was lucky in that I have a good, long relationship with my GP, who also sees ds, and that he is the respiratory specialist / special interest in asthma GP at his surgery, so he pretty much suggested the inhaler and stressed it wouldn't harm ds. I think he suggested a two / four week trial to start with.
Good luck, hope your GP will be able to consider your ds and not be dictated to by the paed - after all, he must know your ds better and know how worried you are day to day? Maybe give the impression you will not be leaving the surgery without something to help as you are so worried - whether its different meds or inhaler or something else. Try and get an urgent appt, even tomorrow as no doubt ds will be up tonight - sometimes when a situation goes on for long it can seem almost "normal" as you get used to it even though its really distressing. Don't let anyone fob you off, its gone on long enough for you and ds. fingers crossed your ds will get things resolved soon x

FnD · 27/10/2010 21:34

Hello
Has the medication helped with the being sick during the day and has it helped with the congestion at night?

I didn't realise until recently that reflux can cause nasal congestion making sleeping at night more difficult. My ds is on meds for reflux and it has improved both the sickness and the nightime congestion - but we also have a humidifier in his room for when he he has a cold and he always sleeps in an elevated position.

Have you tried your ds sleeping in an elevated position and has that made any difference?

The screaming sounds like it could poss stillbe a reflux issue which the coughing could still be but equally as the others have said could be asthma.

So definately sounds like back to the doctor to review the meds and whether they have made any difference and also maybe to try another approach like mynewme suggests.

angel1976 · 27/10/2010 21:34

mynewme Thanks! It's hard, like you said, they see a happy baby in the day and don't see the torment we suffer at night! How old is your DS now? When did it start to get better for you? I really hope DS2 grows out of it soon. I feel so tired, I can't think straight. I am not sure my GP will take me seriously either. He's not very good. sigh

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angel1976 · 27/10/2010 21:41

FnD The thing is DS2 is no longer sick in the day. He stopped being sick when he was about 9 months old. The thing is I think he is better at night. He used to have these coughing episodes that literally last all night. He still coughs at night but its usually only one 'bout' lasting god-knows-how-long but it's definitely no longer than an hour (I think!).

I did raise his cot last night for the first time. Not sure if it's high enough (have read it needs to be 30 degrees) as I've used an upside-down ramekin. He did have a coughing episode last night but I didn't get him up (was awake listening to him though!) so it did stop. He's sleeping 'elevated' again tonight so we will see... I thought about a humidifier... Do you think it really helps? Oh god, I can't think straight... Thanks for your reply...

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FnD · 27/10/2010 21:48

Oh bless you - there is nothing more soul destroying than lack of sleep that feels like it will never end. I really do feel for you.

Even though I say my ds sleeps elevated the truth is he wriggles down so I am not sure how much it really helps!

We picked up a humidifier from argos fairly cheaply and yes I think it does help when he has a cold. the other thing to consider is has the cough got worse since you have put your heating on (if you have!) in which case it could definately be because the air in his room is too dry in which case the humidifier is deffo worth a shot.

My ds also has downs so has little air passages anyway so our go also prescribed cetirizine (anthistamine) which I give him when he is really congested and that works wonders!
Apparently the congestion at night can be caused by silent reflux so even though he is not being sick, the meds might still be helping him at night - just not enougth

angel1976 · 27/10/2010 21:54

Thanks FnD. I feel really, really stressed out. I've put myself in an impossible situation... Have organised a week away with DH for his 30th birthday as a surprise and both DSs going to my in-laws but I never expected DS2's sleep to be quite that bad. :( I have been on the verge of cancelling these two days but on one hand, I feel I really need this trip to get away for a while. I have had an exceptionally bad day with the kiddies away and I just want to run away... On the other hand, I cannot bear to leave DS2. DS1 loves being with his GPs so not an issue there. I seriously felt on the verge on insanity today. I can't even talk to DH about it. He needs a break too as he has been working ever so hard. I just want them to have a good time with their GPs and not to stress the ILs out too much with the sleep issues. Will try to make an appointment with the GP tomorrow.

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angel1976 · 27/10/2010 21:54

The week away is in a week and a half BTW!

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mynewme · 27/10/2010 21:59

FnD is right with advice of elevating his cot, we did that too by using a couple of thick books, I think it was quite a bit higher than 30 degrees though, he was almost vertical! It did help a bit but not completely. Ds was about 1.3 when he started getting better, it was really not long after starting his inhaler. But he became prone to chest infections in the winter which seemed to set him back with his cough so I would say age 2ish before I felt he was more "robust". FnD is also right about the meds which is why I said if the meds are working they should be working at night as well. Maybe he needs a higher dose at night, or something more longer lasting - if it's the reflux that's the problem?
Could you see another GP in the surgery, or maybe ask if there's one with skills / interest in reflux or respiratory conditions?
I'm trying to think of anything else we did that might have helped specifically with ds reflux, but all I can think of was his meds and cutting out cheese - he still dislikes it and he is 3 now.

FnD · 27/10/2010 22:07

Sounds like you need the break! tiredness will make it all seem 10x worse. Definately see the dr tomorrow - don't cancel any holiday and let us know how you get on!
wishing you some peace and sleep tonight!

angel1976 · 27/10/2010 22:11

mynewme DS2 is on a diary-free diet. He went on it about 2 months ago and it seemed to help. I thought it wasn't and took him off it and straightaway, there was a deterioration! The thing is DS2 is actually a very well baby in the sense that he has never had a chest infection, never wheezed (hence we discounted asthma!), never had a temperature etc. He is tiny (0.4-2 percentile!) though probably due to the reflux. It's just the f**king cough and his sleep. The other GP in the surgery is even worse, the one we see now is supposedly the best. I am considering moving surgeries but am just trying whatever I can before the holiday to get his sleep better... Thanks for all your help, have given me lots to think about and my next steps... You have no idea how much you have helped just by sharing your stories so I don't feel so alone! :(

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angel1976 · 27/10/2010 22:15

Thank you FnD. I've been really teary all day. I knew the first year of DS2's life would be hard with DS1 so young still but I thought reaching his first birthday will be a real milestone and means life will be easier (hence the planned holiday!). DS1 definitely got a hell lot easier from his first birthday. And his first birthday is next week and things just seem that bit harder (though I 'know' in my logical mind it isn't because the early days were hell but I just can't think straight anymore, I just feel my days - and nights - have this awful cloud hanging over it...). Sorry to be so doom and gloom!

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mynewme · 27/10/2010 22:18

A lot could happen in a week and a half if you manage to get GP on side! Would ds2 be ok with grandparents if ds1 is there with him?
You do sound like you need a break to recharge.
FnD made an interesting comment about the antihistamine. Earlier this year our GP tried ds on a tablet - singulair - which is for asthma but also has an antihistamine effect. we tried it instead of increasing the dose of his inhaler after a bad chest infection. However while it worked extremely well for his cough it made him go, quite literally, bananas! Tantrums galore, apparently it does have behavioural effects, so we are back to the preventer inhaler. But GP did say some children's asthma can be triggered by an allergy of some kind and singulair treated this well.. I think I am saying maybe an antihistamine could be another option for you to explore / ask about - I am so tired tonight I am going round the houses without getting to the point, sorry!
good luck x

angel1976 · 27/10/2010 22:26

mynewme Thanks for replying. I would have cancelled the trip in a heartbeat if DS1 wasn't with DS2! DS2 adores DS1 and I think him being there will make everything easier than if he was by himself. We have Medised (also an antihistamine) and we have used it very sparingly here and there. Never dared dose the little ones up with it as I have heard of the effects being the opposite of what it's meant to be! At this stage, I think the preventive inhaler is the next step to try... I will let you all know how I get on. I really have thought the whole DS2's health thing to death in the last year. I need a break, some headspace before I go spare!

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mynewme · 27/10/2010 22:26

x post. It will get easier, I remember being worried the same as you when ds was one and he is a different boy now and we all sleep at night, well most of the time anyway when ds is not bed hopping! I didn't have a dc1 to compare with either so just thought I was getting it really wrong!
Could you even afford to go private for a consultation with another paed if it comes to that?
Oh I really hope something gets sorted, but it is clear that you do need a break. Lack of sleep can be so derailing on your mind and make your anxieties worse x

FnD · 27/10/2010 22:26

Right am heading off to bed myself now but just wanted to say angel76 - have checked out your profile and 1) you have two of the handsomest little fellas I have ever seen 2) having 2 children both so little must be just so knackering - so am not surprised you feel so teary. Update tomorrow from dr's!
mynewme - yes I had heard that antihistamines can have behavioural effects on some children - not helpful!

Wishing us all a good night x

mynewme · 27/10/2010 22:31

yes you are right re needing the headspace! I really feel for you. The inhalers though - if your GP prescribes one, he will prob give you the reliever as well to be used at night / when cough is bad - as the preventer needs a few days to build up, iyswim. We then used the reliever - to open up the lungs - and then the preventer straight after. they come with a spacer for ease of use.

angel1976 · 27/10/2010 22:37

FnD All I can say is thank goodness they are cute, otherwise they would have been auctioned off given away adopted out a long time ago!

mynewme Wish me luck.

I feel better for this conversation and many thanks to you both. Will update tomorrow if anything happens. Good night.

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mynewme · 27/10/2010 22:40

reading back through to see if I missed anything, just to say ds has never had a wheeze either, just a night time cough and then a sort of lethargy and cough when running about wild over the last year or so - cue inhalers being upped. But the lack of wheeze made me think its not asthma / he would grow out of it.
nite nite, hope you get some sleep x

bethylou · 27/10/2010 22:49

I've only just seen this thread and I couldn't go to bed without adding to it, even if you've gone to bed yourself.

I have two boys. DS1 had silent reflux as a baby and, I'm afraid to say, is still on ranitidine now at 2.6years old, although there is a major family history of reflux in adults, so I know we are bucking the 'they grow out of it by a year old' trend. He is now lactose free (after 4 months of being clinically anaemic, wight plateaued etc..and like your DS, improved for a month and is now going downhill again -why??!)

He had only been on a newborn dose of ranitidine until recently but was on heavy doses of preventer and reliever inhalers for the hideous night coughing (which cost me several friendships due to the near-depression it created - I really do understand how you might be feeling). They worked when he was well but as soon as got a cold, we'd be back to three hours of non-stop coughing and often up three times a night steaming him in the bathroom. (The bathroom is wrecked!) The coughing went on for 6 months before we got the inhalers. I turned up at the GP again, was 6 weeks pregnant and told them to do something - luckily they listened!!

Recently we've increased the ranitidine so that it is right for his weight and we have removed 3/4s of the dose of his inhalers -it's been amazing. I'm not sure he ever needed the inhalers, but we did, until we found a better answer.

Sadly, DS2 (8 months) has proper reflux (and has ruined the lounge carpet!) and we're limping along again. He actually slept through last night for the first time. I'm convinced that refluxy babies really struggle with sleep. DS2 is on a massive slope - it needs to be like a ski slope to make a difference I think. He's on omeprazole and domperidone as ranitidine didn't work for him. He arches so much in the daytime that I struggle to hold him. It can be heart breaking. Despite this, he's above the 90th for weight and people think I'm making a fuss about nothing (including the grandparents..) He also has sleep apnoea, which I think is linked in his case and is a whole different, scary ball game.

My ideas
Maybe you need to try ranitidine? Suggest it to the GP. They don't know everything, as I've discovered. Different children certainly seem to respond better to different drugs. Could you add in a dose of Gaviscon (which didn't agree with my two) in the night, as it forms a layer over the stomach contents so should help to stop it causing the reflux? Is he having a drink at that time of night which might be causing it? You could ask for some Carobel (a thickener we were prescribed for DS1 to add to drinks to hold the liquid down - I know he's not being sick but it still sounds like reflux symptoms) I was told that silent reflux is more painful than 'proper' reflux because the acid goes up and then down again, not just up and out.

Sorry for the epic post and jumble of ideas above. All I really needed to write was that you are not alone, you will make it through, (DS1 is testament to that!), even though you might wonder how at the mo. I'd say do go on holiday, but personally, I know in my heart of hearts, I might regretfully reduce the time away. I hope you don't have to. Cry on the GP, stamp your feet, make suggestions etc.. Get your health visitor involved too. Keeo going back until they give you something to try. It all takes energy, but it's worth it if you can.

In the long run, when I can see the woods for the trees, I fully intend to start a campaign of some sort to get reflux recognised for what it really is (and what it does to families in some cases) and to try and get it researched better. My GP reckons it's not looked into because mostly it never gets past the GP and because most children grow out of it.

Will stop now.. after sending a big unmumsnetty hug. Come back to us here.

angel1976 · 27/10/2010 23:07

bethylou I'm still here...I'm so sorry to hear both your boys have reflux. :( I was searching for posts on persistent night-time coughing on MN a while ago and found something I posted a while ago about DS1! DS1, in my vague-st of memories, did have the night-time cough as well but it went when he turned 1. The thing I read all your posts and DS2 doesn't have all the 'classic' symptoms of a reflux baby, which makes me think am I going mad? For example, you say your DS2 arches his back a lot during the daytime. My DS2 has never done it. He's absolutely fine during the day (clingy but fine!). The arching/screaming thing at night happens only rarely.

Tonight, not a peep out of him so far. Fingers crossed we have a good night. Can't cut down on length of holiday as it's long haul (already a long way to go for a week) as it's somewhere DH has dreamed of going, never had a chance to and not very child-friendly. Was only going to tell DH about the trip on his birthday but I might tell him this weekend so we can discuss what we will do if DS2 doesn't get 'better' before then. I will get to the GP asap and see if he can help. I don't want to make drastic changes now. We see the pediatrician again in January and I hope things will be better then, otherwise he will review. Will find out about Carobel as well.

I was going around chanting to myself 'I'm never EVER going to have another baby again...' like a mad woman. I just think I will go off the deep end if I ever have another baby that is as hard work as DS2. So I feel for you bethylou!

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angel1976 · 28/10/2010 19:38

Oh my god, sod's law, I had my first night of good sleep for weeks last night. When I went to bed, DS2 coughed a little and I thought 'Uh oh... Here we go again...' But he slept all night without a peep and only work up at 7.10am when DH woke up to have a shower!

So I went to the doctor's today and can't get an appointment. Maybe tomorrow. However, I put in for DS2's meds and he's prescribed Ranitidine (sp?) instead of Omeprazole because he couldn't get Omeprazole in a solution. I know I can get liquid Ome through my friend (who works in a hospital and can put in a prescription there and they originally prescribed it) but should I try Ranitidine on DS2? Anyone got any experience of both? Fingers crossed things go well tonight again. I just feel more human having one night of good sleep!

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mynewme · 28/10/2010 20:18

That's just typical isn't it! Its great you all got a sleep. No advice re changing to ranitidine, it did work for ds but we never tried omeprazole. Maybe the hospital you mention would be able to advise you? Or even the pharmacist in your chemist? Children's Gaviscon powder in our ds milk did also help - bethylou just reminded me of that and her suggestion of checking the dosage of meds against his weight to be sure he is getting correct amount is good.
Good luck with GP tomorrow.

FnD · 28/10/2010 20:45

Hello - brill news that you got a good nights sleep - heres hoping the same for tonight.
Like mynewme - we only have experience of ranitidine and domeperidone together. Found ranitidine to work but like Bethylou has said - it needs to be a therapeutic dose.
How is the world feeling today angel76?