reflux baby sleep advice

[shellbell1]

hi all
my 4 month old baby girl was diagnosed with reflux when she was a month old. She has been on treatment ever since after several referrals to the hospital etc as she was constantly crying in pain. Things have now settled down but her sleeping pattern at night it all over the place. It has never been particulary good since day one but there was a time she would sleep through the night only waking once or twice and now she just seems to wake up all the time during the night. We raise the mattress and keep her up after her feeds etc but nothing seems to be helping during the night. She hasn't had a night feed for about 2 months now (due to reflux related issues) and she is on 7oz every 4 hours during the day and her last feed is 9pm. We have a bedtime routine and everything and she is put to bed in her cot awake and self settles everytime.

I just wanted to know if anyone else has had similar experiences and if there babies started to settle during the night eventually and if weaning helped at all? Me and the hubby are pretty shattered and sometimes have to take turns sleeping on the sofa a couple of times a week just to get a decent nights sleep. It seems to me that her stomach plays up during the night which is what disturbs her sleep. Any advice/comments would be great!

Sorry for the massive essay :-)

Thanks bagofholly. Can you give them several meds at a time as she is only currently having 1 medication once a day which i feel is wearing off by the time the early hours come? We have kept on top of the doseage as i weigh her quite frequently. My lo has silent reflux, its terrible isn't it. We constantly have her raised too :-)

Yes although it's worth checking with the prescribers as some drugs potentate the effect of others.
Mine had ranitidine and domperidone before each feed. I'd fill up the syringes each morning - you think it's going to run out but it doesn't.
You can also ask for blood tests to establish intolerances/allergies and I'd be minded to ask to switch to neocate as its entirely milk free and therefore eliminates any chance of an allergy to milk proteins. This made a huge huge difference. My other twin, with classic reflux is on enfamil AR, but he was the less ill of the two.
I really feel for you. Don't suffer - push hard till you find a solution because it really can be addressed with drugs.

thanks bagofholly, we did call the paed about a week ago and he said that she is on the best meds he can give her so basically fobbed us off and told us to persevere as it will get better as she gets older! He isn't concerned anymore as she is much more settled during the day and isn't waking up screaming in pain during the night anymore, she is just "simply disturbed" during the night which may not even be her reflux, given her age he said it could be just one of those things and it will settle down in time. He also told us not to ring him again and deal direct with the dietician as she needs weaning which will apparently help. Nice chap eh?

grrrrr!! :0( x

Grrrrr! Get another paediatrician because that one is talking out of their arse. Are you near Essex? Ours sees private patients v quickly and is fab.

Failing that, google paediatricians with an interest in gastrology and you'll find other local alternative drs to see. A private appointment is about £120 and I bet you'd pay that any night when you've heard crying for hours.

It's not just the meds your paed should be looking at, but formula too. Please please don't be fobbed off. The way you're being treated is a disgrace.

How are you giving the omeprazole or similar med? I was given no advice when DD switched from ranitidine to omeprazole. But I found info that it is best given on an empty stomach and with something acidic. We had to open a capsule and tip the granules out to give to DD. We found that putting them on a teaspoon of apple purée was good and first thing in the morning, about 30 mins before milk.

think i will just keep pestering this paed just to piss him off, like you say bagofholly we should be treated better! Shes not screaming in pain anymore, day or night but her stomach is still definitely off it most of the night. We give her lansoprazole through a 10ml shringe, we ensure that the small crystals go into her mouth and its given on an empty stomach first thing on a morning. Thing is, i think its wearing off by the time she starts waking up during the night even though we are keeping on top of her dosage

Shellbel I could literally have written your post. My boy of 10 weeks has suffered from silent reflux for 5 weeks now and it has been pure hell. It's under control now in the day like you with omaprazole but he still isn't easy and for e.g. Won't go to sleep in pram and is generally unhappy unless being held. He's huge though so not easy carrying him around in a sling for long.
We've just upped the dose as things had started to get worse again but I suspect we need to go onto dairy free formula as well now. The paed we are seeing thinks CMPI.
Last night was the worst might yet with him up every 40-60 minutes and today I feel so depressed about it all, especially reading that this may take months to resolve.
I don't have any particular advice but just wanted to echo support and say we are very much going through it too. I couldn't find a support group here so maybe we should start one!

My DS is 10 now but how this took me back! 2 hourly feeds of veg formula (no dairy) waking every 2 hours screaming his head off and then being a nightmare to wean because of the acid food thing. we tried loads of different techniques and what worked for us was a combination of drugs, little feeds every 2 hours, a raised end to the cot. we had almost 2 years of this and then found a doctor who tested him and found he had an unusual bacterial infection. low dose antibiotics and within 4 days he was on 8oz bottles and actually eating real food. you have to pester pester pester I wish MN had been around then because i would have done it at 6 months and not gone through 2 yrs of hell. he is still a pain with eating bless him because it went on so long so try and get it sorted early if you can.

try putting a little less in her bottle.

Have a look at the "sounds for silence" cd by dr Harry zenwith or something like that. It worked wonders for me- don't write me off as a loon either! But it really does help settle- and I had a silent refluxy baby that stressed me to the point of shingles. Good luck

Tummy sleeping worked for us too.
Mine hated to lie on her back even for nappy changes.
You can get an angelcare sensor pad if concerned.

My DS had severe reflux with which he would choke and stop breathing. LOSEC helped him about 50% with the irritability. DS3 is my 5th child and I have never experienced sleep deprivation before like that! Even with twins before him! He slept for 20 mins at a time and we got no sleep for weeks on end. Only thing that helped was the LOSEC and an Amby hammock bed. From 20 mins a night he went to 5 hours! My DS was quite severely affected although he didn't lose weight so avoided an op. He started growing out of it about 19 months and it went away mostly aged 2. He is 3.5 now and still has it but it is more mild indegestion. He slept through from 11 months and we co-slept from 13 months when he outgrew the hammock. This was the only way he would sleep. It was very hard work but once they get more mobile things get easier irritability wise. Jumperoo was good for DS too even though you would think it would make him more sick.