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 :-)

Hi

Wow, sounds exactly what DD was like, I totally understand where you are coming from, and although it is no help now it will get better.

What medicine is she on? My DD didn't drop her night feed until about 6 mths old I think, is there anyway you can reinstate this as it may be too long to go without food?

How long are you keeping her up for after her last feed as we found that was a huge issue but you can't keep her up indefinately!

The fact she can wake only once/not at all means she can do it so hold onto that fact and it will happen eventually!!!

Have you seen your gp about this? They can prescribe ranitidine (an antacid) and other medication, my ds takes this and domperidone which (if I understand correctly) moves the milk through his system more quickly making him less likely to vomit.

Both my younger children had reflux and what made the biggest difference was cutting out dairy while I was bf, then putting them onto a hydrolised formula (cow&gate pepti - on prescription) once I weaned them.

You can buy pepti on the internet but it costs £25 per 900g tub. We get it on prescription.

Also try posting this in the feeding and sleep topics, you may get more replies.
Hope you get some rest soon, it's crippling isn't it?

I could be writing your post - ds is 14 weeks, diagnosed reflux, and wakes anything from 2-10 times a night. Mainly he can only go 2 hours before waking, and he isn't hungry when he wakes - tends to fall asleep again fairly fast but only if I pick him up, as think the angle makes his tummy better. His bed is propped up, we sit him up after a feed, all the right things really. Am getting so envious of everyone else telling me one by one their babies are sleeping longer and longer ... Through the night seems miles and miles away to me.

So sorry I can't help but I can sympathise. It's shit!! Like you I'm hanging on in there waiting for the miraculous day I awake and it's 6am

When my dd had this the hv advised us to put her to bed in her carseat. This worked quite well, think she slept through for the first time but I don't think this would be recommended now as I believe prolonged car seat use has been linked to sids and spinal problems. Having said that, I do think the more upright angle helped her to feel more comfortable.

It sounds to me like she's hungry, and having tummy pain. Have you tried offering milk or water?

My dd had terrible reflux, back and forth to the hospital, tried all medication etc. She grew out of it around about 8 or 9 months I think. I really feel for you, it was a very stressful time when you want to be happy and obviously don't want your baby to be in any pain. I did wean at 16 weeks on recommendation of the hv and this did help. I know they recommend not to do it at this age so I am not recommending it to you, my dd is at school now so I may be way out of touch with current thinking. It did work for us though. I hope things get better for you.

My reflux ds slept through the night once I started putting him to sleep on his tummy (it eases digestive discomfort).

My ds is 16 weeks and has silent reflux. I'm ebf'ing and am doing little and often as that's what works best for us. I've managed to greatly reduce the amount of Gaviscon he has, but I'm feeding every 2-3 hours day and night, and tbh am blooming shattered!!

So sorry no advice, just lots of sympathy....

DD was also much worse at night. She would go to sleep fine and sleep well for about 3 hours then start waking every 45 minutes for the rest of the night. Early weaning made no difference. Switching her from ranitidine to omeprazole did help. Time probably made the greatest difference. It is grim.

Have you tried getting your DD to sleep on her left side? Sometimes this helped DD. It is supposed to help keep the opening at the top of the stomach closed.

DD was also much worse when teething. With hindsight, she probably needed a higher dose of medicine when teething.

DD is now 4 and a great sleeper. I often get weekend lie-ins until 8 or 9 am. Only fair after the all the crap nights we had until she was about 18 months.

Poor you, wouldn't wish this on my worst enemy. DS2 had severe silent reflux and was on ranitidine and domperidone. He outgrew it at the age of one - the only blessing. He still had a night feed until then (I agree, try reinstating it maybe?). He also slept in his bouncer (we had a baby bjorn one which kept his neck and back straight), never lay down flat, ever! I carried him in an ergo all the time. Weaning didn't seem to make a difference. He was breastfed but I agree with trying different formula. Often reflux babies have intolerances/ allergies so that could be counteracting the medicine. Bear in mind that three is a four month sleep regression anyway (google wonder weeks too) so it may be unrelated to the reflux. Add teething to the mix and it all adds up to a confusing mess! Good luck and hope you sleep soon. If it's any consolation, none of mine (refluxy or not) has slept well until the age of one but then it all changes!

It's hell on earth isn't it?

Only advice Is try a bouncer to sleep in. Ensure you are getting meds and try and space them out evenly.

I weigh DD every 6-8wks and check if dosage has changed by ringing doctor.

thanks for all your lovely replies and sympathy, its comforting to know other people have gone through it and come out the other end :-) We did try reinstating her night feed but she just used to fall asleep on it as she was so exhausted. I don't think its hunger as she doesn't physically wake up crying, its more disturbed sleep and she'll move about and wimper and then go back to sleep after we have put her dummy in or comfort her. I should have said really that its silent reflux so there is no vomiting anymore which i'm not sure is a result of the lansoprazole she is on. The meds have certainly made a difference during the day but no difference at all during the night! Thing is we can only give her lansoprazole once a day which i think is a bit crap! We also have some omeprazole so i think we will give that a try, apparently its not as advanced but you can give a bigger dose. Got about 2 hrs last night :-(

I have tried putting her on her left side to relieve the large bowl but this doesn't seem to work unfortunately. I haven't yet tried putting her on her front as i was worried about SIDS and everything else the HV drills into us. Think I may have to try it though because she does seem to be more comfortable when she is pressed against us during the day when we are holding her etc. I keep her upright for about 40 mins after every feed, especially the night feed. We weigh her frequently so the doc can confirm the correct dosage according to her weight but this strangely doesn't seem to help her at night? She is also on a special milk called Nutramigen which is designed to aid digestion and also helps reflux babies but again its made no difference to the nights. It was originally given to her as she was displaying signs of a milk allergy which we also need to be careful about when weaning her. It may be teething too but its all very confusing to me as my 1st baby was the "perfect" baby so i'm at a loss with this one lol. My friends all have young babies who sleep through the night, its torture!

Think I will have to agree with you all that age and time is the only answer, thanks again guys, you have been a massive help. Hope you all get through it too! :-)

My two refluxy babies didn't sleep until they were able to roll onto their tummies. They were fine in the day cos i had them in slings that held them upright but the nights were less pleasant. No help here I'm afraid just sympathy.

I'm afraid we never really solved it, despite going through it twice! Taking turns, having a night on and a night off, kept us sane. HV did suggest car seat for some of the night to keep us from the brink. We also kept each dc upright for as long as it took for them to lie comfortably after the evening or night feed. Both usually took about 90mins but did then sleep better after. Even now at 2, dc2 still has problems with wind-both ends-in the night. The paediatrician has said that a night dose of gaviscon , on top of the usual cocktail, might help as it forms a layer over the stomach contents. It just made ours constipated though. I also found that I zoned out of conversations about sleep with mum friends as it was just depressing! I also still sleep now when the dc do in the afternoon. Anyone who thinks I'm lazy should try getting up in the night 3-8 times a night for 4 years! Sleep deprivation is a recognised form of torture! It will get easier in the end. Much sympathy in the meantime.

Are you sure it's okay to give omeprazole and lanzoprazole by the way? I thought it was either or. Lanzoprazole has worked best for us.

Reading you story brings tears to my eyes as I know how tough it is. As a mum who had had an extremely reflux-y baby I feel for you as I know it is sleepless hell. I spent many nights with my DD with my eyes shut holding her upright although not with me sleeping just so that she could sleep. She was hospitalised at 2 weeks old due to reflux after screaming continuously for 5 hours - she was then so exhausted I could not rouse her from her sleep and she was lying in a pool of her own vomit. The vomiting went on for months. I also used to burp her (sometimes for half an hour) at a time when she was newborn due to her digestion being so bad.
We tired every different medication(gaviscon, renitadine, omeprazole etc). The doctor asked me to watch out for what time of the day her reflux was the worst - for her it was first thing in the morning. When she was on Losec, we also experimented with splitting the dose and giving to her once in the morning and then again at night so that she was getting 50% each time. Don't be afraid to try different medicines as her body is changing as she grows. We spent way too long on Gaviscon - I later heard that this is prescribed first as it's cheapest for the NHS (don't know how true this is?). Be persistent with your doctor - if the meds are no longer working ask to change.
Dropped her medication at around 5 and a half months. I didn't drop her 11pm feed until she was 10 months old. Unlike other babies, she was unable to feed more during the day to get through the night - she has a sensitive stomach and it was my instinct not to overfill it. She has just started sleeping through at 11 months old.
Please don't compare yourself or your baby to others - it's an extremely tough time but you will get through it and be able to enjoy your time with your baby. Wierdly I found that because of all this we are extremely bonded.

Please push for a trial of dairy and soya free formula (or cut both out completely yourself if you're breastfeeding). It's the most common cause of reflux, as we were informed be the paediatrician when we finally got to see one at 13 months, but GPs don't like to prescribe it because it's expensive. Early weaning can help a lot, we started at 4 1/2 months and switched to a mainly solids diet dropping most of the milk at 6 months (under medical supervision I hasten to add!). Better to try the formula first though then you'll be able to spot if she reacts to any other foods as you introduce them, we missed my DDs oat intolerance because all her symptoms were covered by the dairy/soya problems and the omeprazole.

Things will get better, my DD is now 20 months and hasn't grown out of it (despite every single doctor and reflux mum I've met promising that she would magically get better at 12 months) but it's almost completely controlled with diet (and a bit of movicol to keep things moving!), I honestly couldn't tell you when she last vomited, and she sleeps through about 6 nights out of 7. There's light at the end of the tunnel, it's just a bit hard to see it when you're so sleep deprived, you will get there in the end. You're already doing really really well, you've managed to persuade a 4 month old baby with reflux to self settle at bed time, that's an impressive achievement in itself. Just hang in there!

aw thats reassuring popcorn, i was also going to try splitting the dose but wasn't sure if it would be as affective? Sorry survivaloftheunfittest, I meant to say I will try Omeprazole instead of Lansoprazole, just to see if it makes a difference to the night stomach pains she has - just hope it doesn't affect the daytimes as she seems to be tons better during the day now. We also tried infant gaviscon for about a month and saw no difference apart from constipation so doc advised to take her off it. We don't have the vomiting anymore (thank goodness) but she does suffer with bad wind at both ends still so I do feel like i am constantly winding her. I feel like I'm only just starting to enjoy her but the nights do get me down. Me and the hubby have done the same, taking it in turns on the sofa just so each of us gets a good nights sleep which does help. She hasn't particulary taken very well to the car seat, she only seems to sleep for an hour at a time in it and always looks uncomfortable in it. Feel so sorry for the poor luvs, NHS is typical with the gaviscon treatment, i also was told it was the cheapest resort, never mind the poor babies who are suffering with buring pain!!

Luckily we eventually got referred to hospital after weeks of endless screaming and difficulty feeding and vomiting, the Dr gave her lansoprazole which seems to have made a huge difference to the day times so that i am grateful for. I'm hoping that when she is old enough to roll onto her tummy then it will get better, also with age and food! Fingers crossed ay :-)

Ours is on Neocate hypoallergenic formula for lactose intolerance, have you tried that?

I have an 11 mo DD and we spent from week 5 to week 15 of her life doing shifts letting her sleep upright on us so she could get some sleep. After being told by the doctor it was reflux and going through gaviscon, ranitidine and domperidone, we insisted on a private referral and got ourselves to the best (mumsnet recommended) consultant we could find in the country at great ormond street as we were at breaking point.

He suggested multiple food intolerances. Mthe indicators being:

Started at around 5 wo
Worst at nights in the early hours (reflux is apparently worst in the evenings or mornings)
Non solid or greeny poos

I cut dairy, wheat and soya (and it had to be every trace for us) out of my diet as breastfeeding and introduced a non dairy formula, Neocate. It takes 3 weeks to come out of the system and she was like a different baby. Still didn't sleep more than 3 hours at a time but better than the 30 mons or so we had been used to!

If the meds aren't working, it's either not pure reflux or you need to see the consultant and change the meds. Don't be afraid to be pushy!

Oh and which version of nutramigen are you using? There are two and for very dairy intolerant babies you need either neocate or nutramigen aa. The normal nutramigen still caused a reaction in DD.

we are using Nutramigen lipl - we tried neocate for a while and she was just the same. The formula doesn't seem to affect her tummy during the day, infact she is more settled on Nutramigen than she ever was in Neocate but I think you may be right about the meds, time to try something else. Going to give Omeprazole a try and if no change we'll be back at the docs :-)

I'd phone your paediatrician's secretary immediately and explain what you've said. They can add in several other options and also the drugs are v weight sensitive so as soon as she puts on weight you'll need the doses adjusting.
My twins both have reflux, one has silent, the other classic, and the 'silent' one can only tolerate neocate. Domperidone made a big difference, plus ketotifen, omeprazole, ranitidine, and gaviscon in every feed.
Waking every 2 hours is torture and you shouldn't tolerate it - seriously phone the paed now and they can adjust the dose over the phone and fax prescriptions to your GP/pharmacy.

By the way, my twins have never slept flat - they slept on their bouncy chairs, car seats, or propped up. Do whatever works. Our paed said that it was ok and it meant we all got a bit of rest without compromising on the SIDS guidelines.

lagoonhaze makes a valid point as well about calculating the correct does for the weight. I had to ask the doctor to recalculate the does, it was not something they offered to do. So if they haven't, ask them to recalculate the does according to weight.