advice for reflux baby please help

[ledkr]

dd 4wks i waking for feed in the night but then wont take it,she is rooting and crying and takes the teat ok but then as she starts to suck and the milk comes out she cries and wont take it,sometimes she will then have a dummy and a cuddle and then i try the milk again and she takes it or sometimes she will eventually take it if i just persvere and keep offering it. She is on gaviscon,ranatadine and dom peridone.The 2 meds she has thru the day-last dose at 10ish and the gaviscon in every feed.Am i doing something wrong?Its annoying cos she has a cleft palate too so feeding takes ages and then i have to keep her upright so feeds can take up to 2 hrs.I have also noticed her doing this in the day as well but not as badly and she is also starting to snack rather than take a full feed which is very time consuming.DH is back at work Mon so i will hav to fit it all in with the school run etc,any suggestions?

I would go back to the persom who prescribed the meds and see if you can try a proton pump inhibitor like omeprazole rather than ranitidine. PPIs are more effective but have a slightly riskier side-effect profile. I think.

I really really think you need to see a feeding specialist sooner rather than later given the cleft issue as well. The hospital should arrange this for you IMO. They haven't just sent you home and left you to it have they???

no we are under the cleft team and have special bottles etc,i just thought they would only really know about cleft and not reflux.We have a referal to the paeds in at the mo for support with the reflux but in the meantime a bit lost,should i try to spread the meds over the 24 hrs so it working better overnight?

bump

When my son was on ranitidine and domperidone, I always gave him hs last dose of ranitidine with the last feed at around 10 pm. The other two doses he had in the day. Can't remember what we did with the domperidone, it's all a tired blur.

I would really ask about a PPI drug as opposed to ranitidine - PPIs have repoted efficacy of around 90% while ranitidine is about half that. The other thing to ask the paeds is if there is any chance of trying a hypoallergenic formula like neocate, unless you're using pumped milk - reflux is often aggrevated by cow's milk protein intolerance (not the same thing as, and far more common than, lactose intolerance).

Does your DD by any chance have a blocked nose when she wakes at night to feed? Reflux babies can be very snotty, and lying down exacerbates backwash of acid and nasal congestion IME. Just trying to think of reasons for refusal of night feeds in particular.

Your GP may be able to do the drug prescribing for your DD while you wait for the paed appt to come through. Ours was happy to prescribe DS omeprazole at 3 weeks - I think he may be a bit unusual but it might be worth discussing it all the same.

gosh narmada thanks,you really are an old hand,how is ds now?
My sis is a neo natal nurse and suggested that baby is only on the minimum dose of ranatidine and she has put on weight since it was prescribed too.Ranat was working well till few days ago so that makes sense.The other thing is she hates the taste and spits it out so tonight i mixed it with a bit of milk and put it in the teat and she took it all ans seems much more settled now.How do you tell if it is the milk that is the prob?Is it just trial and error?I wish i could bf but have had a mastectomy so ob cant.

Ranitidine is definitely weight-sensitive, so if your DD has put on weight the dose may indeed need to be upped. It does taste absolutely awful - what baby would like peppermint/ alcohol combo, for heaven's sake?? I don't know why they don't make it in a paedeatric suspension, probably it's because it's not licensed for use in that age group or some such.

Re. whether milk is the problem, I think it's just trial and error. If there is eczema as well as vomiting, diarrhea etc, I think it's a fairly good bet that milk's contributing. I think with our DS it must be milk that's playing a contributory role as he's on the maximum dose of lansoprazole and although he is somewhat better he is still in obvious discomfort. He seems to get tummy cramps :( which make him kind of fold in the middle and wake him from sleep, but we are blowed if we can get him to drink neocate, it tastes like crap so I don't blame him. In fact, he now appears to have devceloped a bit of a feeding aversion so that's not good and I think we need to go back to the paed.

Sorry to hear about your mastectomy. That must have been hard.

do you know what?It was a very easy decision,i was 27 when i had the tumour and had a very high chance of a reccurance so just got rid,it was a weight off my mind tbh.
how old is your ds?DD seems to be settled sometimes and is not too bad at night cos had a long sleep from 9pm-4am then feeds and goes back till 7 or 8.
I pay for this tho as the day is one long round of little feeds and naps in arms or finding imaginative ways of keeping her from wingeing and squirming,she doesnt actually scream tho,just wriggles and grimaces and spits and coughs,poor thing,am going to speak to gp tomorrow.It also hard that we have to hold them up after feeds as i now have a baby who wont be put down!!

My DS is 19 weeks.

I can understand what you mean about your op. I think I would do the same in your position.

I know what you mean about the holding upright thing. It's a total pain and TBH I don't find it makes the blindest bit of difference.

Glad that your nights are OK - but the squirming you describe in the day sounds oh SO familiar. The one thing I have found temporarily helpful is to impose a kind of routine in the day as I think a lot of DS's squirming is due to overtiredness. It goes like this: nap about 1.5 hr after waking (short - around 25 mins), another one around 1.30 - aim for this one to be longer, around 2 hr + but doesn't always work, and another short one around tea time of arbound 45 mins. All of these are on me, swaddled, pacing, and with dummy firmly in. He thene dozes on and off from 7-11 when I can finally put him down, usually for around 5 hours but then we have problems re-settling in the night after that. Obviously this is in no way ideal as it's physically exhausting with a 17 lb baby but at least it means that we avoid (mostly) the screaming and the horrible squirming and scratching that I just cannot stand. It's only possible because my elder DD is in nursery 4 days per week :( poor thing.