Mummies of babies with reflux on meds - Help!

[angel1976]

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

Thanks for all your concern. I feel more positive today. It's weird how one night of good sleep can make such a difference! I spoke to my good friend who used to be a pediatric nurse and she says it's a very common medication (Ranitidine) and I should be able to switch to it with no problem. I think I might try it tomorrow. Ranitidine is easier than Omeprazole as it doesn't need to be refrigerated or changed every two weeks so fingers crossed! It's 150mg/10ml and the dosage is 2.5ml twice a day so that's 75mg a day for DS2. Does that sound right? He's really wee so only just weighs about 8kgs.

I think that sounds about right, but could you get a syringe at the chemist so that you know you are giving the correct volume if you are worried - or use a syringe from a nurofen bottle? I do seem to remember we adjusted the dose sometimes, or maybe it was the time of the dose though I can't really remember why . It was such a haze of sleep deprivation - I know you'll understand this! Possibly it was simply just to ensure we gave him it before / after his feeds, or the lower dose was not as effective. I don't think you need to worry about the size of ds in relation to the meds - other than to be sure he's getting enough - we had the same worries as ds was small too, but I am sure I remember our GP saying that we couldn't really overdose ds on it.
Hope it works ok for your ds and hope you manage another night's sleep x

mynewme I am only using syringe at the moment to administer the doses! Heard a few coughs but DS2 been sleeping well tonight so far. Fingers crossed!

Brilliant news though angel!

Ranitidine worked for DS1 and omeprazole vaguely works for DS2 (better than the ranitidine anyway!) They do omeprazole as a liquid at £300 for a 75ml bottle (as my GP prescribed it without realising and has now had to change it as he reckons the PCT will be on his back!)

If you haven't tried ranitidine, I would, but I'm not sure whether it's a good idea to change before you go away. Ompeprazole takes a few days to build up in the system (I think) so if it is having any good effect, that might be lost by the time you are on holiday and take a while to regain. So tricky to know! I'm not sure whether you can use both, but I seem to think not - think they are both PPIs and do the same job. Have you checked out 'cryingoverspiltmilk.nz' website? I got lots of my info from there.

As for the lack of symptoms, We only knew there was still anything wrong with DS1 when we tried to get him off ranitidine and he started being sick/complaining of tummy ache. Other than that, there was no clue whatsoever, until the last couple of months, and he wasn't a 'back archer' either after we stopped breast feeding at 4 months.

Good luck with the GP again.

p.s. We have omeprazole tablets to disperse which are easy to store, although DS2 is not keen on taking it, especially as it doesn't disperse very well. However, having tried the liquid, he doesn't like that either and we're no longer costing the surgery £8000 a year!! I'm currently trying to remember 18 doses of meds/inhalers etc.. per day between the four of us and that in itself can be draining!!

DS1 has 2ml three times a day of Ranitidine but I haven't quite got the energy to go and check the concentration! He weighs 13kg. You can do three doses or two - it's the total amount that matters over the course of the day I believe (but don't hold me to that).