Relfux babies and sleep

[Mellymoo]

Hello

I have a 14 week old DD who has reflux.

We initially started her on Zantac which didn't do much and she is now on Losec. Initially it was 10mg per day, it is now 20mg per day. The paed is talking about doubling it again to 40mg per day.

The thing is, she seems to be okay on the doubled dosage, and yesterday and today she has been terrible. SHe has been bringing up a lot of milk, and even some of the Losec tablet is coming back up with it.

To get her to go to sleep is a nightmare. She won't self settle in the cot, we've tried a lot of things. She falls asleep in our arms after quite some time , then we put her in the cot. This usually works.

Lately though, when we put her back in the cot (esp. when she is having a bad day like today) she wakes up again crying and we have to keep going in to resettle her.

THis morning, it was taking her so long to go off to sleep in between the waking and crying, I just had to walk out and let her cry. I felt awful, but nothing else was working and she would still cry in my arms anyhow. SHe cried for about 40 minutes all up, then eventually went to sleep, but not a great sleep. SHe got up for her next feed, still tired.

I put her to sleep afterwards in my arms again, and again she woke up crying when I put her back in the cot. I had to let her cry again, at my wits end. She cried for less this time.

If you have a reflux baby, how do you get them off to sleep ?

I'm finding it hard to get her to sleep well, mainly in the daytime and it's running me ragged, especially when I also have a 4 year old DD as well, that I cannot spend a lot of time with these days because of the refluxy baby.

Any ideas ?

[OM]

I was like you when Isla was born and omg it was horrible you poor thing I know how you feel.

We went and bought a baby hammock and ever since Isla has been a fantastic sleeper all night etc. I highly recommend a hammock as the baby isn't completely flat like in a cot.

[FourAngelKisses]

:hugs: I am in the same boat with my 11wk old. He was awake all day yesterday and has only had 1hr sleep today.

He spends pretty much all day sitting up in the pram. If he does go to sleep, I will lie him down and pray that he does sleep and I don't have to move him and risk him waking. But with him there, at least he is occupied and can see me while I'm busy around the house or with the other kids.

[scarlet]

Hi there I just replied to your other reply in the other post about the losec dose, if you could read that, I put in my concerns of any doctor wanting to double the dose again to 40mg a day, please read it.

With the sleep, the best advice I can give is give it time, the losec can take a good two weeks to show a difference and may take up to 3 months to give the full effect, so in that time, if in all your child is having more good than bad then it is working.

Reflux is classified a rollercoaster as you get a few good days and then all of a sudden you get a bad few, anything can cause flare, teething, illness, immunisations are all biggies when they are little...it is a pain, but it does eventually get better.

[Mellymoo]

Thanks Scarlett for your advice re: the 40mg Losec. I will definitely query this with the paed if he suggests going for the 40mg - he said last time we saw him if the 20mg didn't work, to double it to 40mg. I thought - what then - do we just keep doubling it until it works ? Didn't seem like a 'proper' solution to me.

I'll persevere a bit longer - she's been on the 20mg a couple weeks now, might take a bit longer, but she is better than what she was a long time ago. She still has bad days though, and when she has them, they are REALLY bad.

I always thought that when they were on meds, they shouldn't have any 'bad' days - obviously I was wrong. When she has had these bouts of bad days, I always thought the meds weren't working, but now I understand that no matter what meds they are on, they will still have bad days.

At what point should she come off the meds ? I mean, she cannot stay on them forever - when do you know to stop the meds ?

[TeamAwesome]

Do you have her mattress elevated? I'm only asking cos if she's asleep in your arms but wakes in the cot then maybe it's not elevated enough. We used a normal pillow underneath DD's mattress as anything smaller didn't seem to elevate her enough. My MIL (an RN and therefore an "expert") didn't understand why DD couldn't lie down on her bed when we were there and stay asleep, then again also didn't understand why I'd get cranky when they'd lay her flat on the floor (cos of course it would upset her tummy then I'd be the one left to deal with it all.)

Also can I reccomend buying a baby swing? My DD had reflux and slept best in hers (even sometimes at night time) and was a real life saver for me on those bad days.

If my next bub has reflux also I've just recently come across this product (http://www.buboo.com.au/products_mat.html) and think it could help you too.

HTH

[mim1]

I had a similar situation with Josh and his reflux at that same age. I talked to the paed and he explained that the purpose of the medication was to help control the symptoms, but not to cure them. I was worried cause Josh was screaming a lot and in obvious distress from his reflux despite his meds. I thought that maybe it meant he needed new meds. But my paed explained that anything can make it worse for a time (especially not sleeping, a virus, family stress, etc) and although he was screaming every now and again it was much better than before he started treatment. He reassurred me that they do improve as they get older and the peak of symptoms is usually in the 8 - 14 weeks range.

The good news is that he was right! Josh still has reflux, but no longer screams inconsolably (except when we tried him off his meds last week ... oh well). I never thought things would get better, but let me assure you that they do!

As for sleep, do whatever works to get her to sleep. I was worried that if Josh didn't self settle most of the time I was a bad mummy. What nonsense. Especially with a reflux bub. If she will go to sleep when you put her to sleep in your arms, then do it. Josh and I have both been much happier since I rocked him to sleep when he needed it. The good thing is that once Josh is no longer overtired he actually self settles in the cot anyway! Also, is she wrapped up tightly? Josh loves to be wrapped and he loves to be warm (I didn't realise how cold he was til I wrapped a 2nd blanket around him and he slept so much better). Josh went through a stage at about 3 1/2 months of not sleeping during the day and cause so much else was going on I didn't realise it was simply due to the fact that I was no longer wrapping him (he was in a sleeping bag).

You can hire a hammock or a swing. We've got a swing from a friend for a few weeks and wow, what a life safer it is! I can cook dinner, I can eat and he's happy for up to half an hour at a time! To hire either try www.hireforbaby.com , I've heard that the hammocks from there are great, especially for reflux bubs.

[shaz77]

Hi Mellymoo,

My 10 week old DD also has reflux and is on losec. I have a telephone book under one end of her cot mattress to elevate it - until last week she has been sleeping (i use that term loosely) in her rocker/bouncer as it kept her upright. Sometimes she would cry herself from one feed to the next, often screaming for three hours straight overnight. I also have a 22 month old DS so I don't have time to sit and nurse her all day while she sleeps. A few suggestions which have helped her:
* a white noise CD (works off and on but worth a try)
* wrapping - I use a cot sheet to swaddle her so she is more likely to stay asleep when I put her down
* sleep school - health centre can refer you - its good to have another pair of hands helping and to give you some reassurance - I resisted this as it felt like a failure but it was really good and the staff are so supportive
* mothers group - I still meet with my mums group from having DS and they are great being willing to pace with her for a while - they have been my sanity salvation:)

[IheartOman]

Oscar has NEVER really slept during the day and spends 3pm-9pm screaming his head off. :banghead: I have only just worked out that he has reflux and went to docs today. He is now on reflux formula and Zantac.

He will have a bit of a nap in his bouncer during the day if I rock it -normally about 20 mins tops. I don't know if there is really any solution.

I think I am on to something here though which may work for you - of a night time I now feed him in his room with very dim light. Burp him and then with him over my shoulder I sway side to side for about 15/20 mins and he falls into a deep sleep, I put him in his bed and he normally stays asleep :smiliedance: Hopefully this could work for you?

Also, we are booked into a 4 day stay with mothercraft nurses so they will be able to help with settling bubs with reflux and getting a good routine happening. Depending on where you live you will have a place you can go to just not sure what they would be called in your area.

[lovingmotheract]

as i mum i have been there done that and have come out the other end and i can that the one thing that helped me was having her mattress elevated and every time she did not sleep well or not at all i elevated it more and i had hannah in a safe t sleep (http://www.safetsleep.com/) and i have to say it was the best thing ever.

[shereejoy]

They all say it I know - it does get better, but that is so hard to believe that there is any light at the end of the tunnel. I was one of those, until we went to hospital numerous times and saw less fortunate kids that DO NOT grow out of their condition. This was the turning point for me, as more often then not I was so down and out about it all and stressed all the time. But hey who wouldn't be when you child refuses to feed. We went through a really bad patch at 5mths where Lachlan would not feed and would only feed half ok when asleep. So for 2 months he was tube fed due to the fact he was failing to thrive, but not dehydrated because of what I was doing through the night. From tube feeding we were then over extending his belly, so then we have been through an extended period of over extension of his belly. He would power vomit his whole bottle of 120ml. This is why we were in hospital, because initially they were not sure why these power vomits were happening. But looking back this was the reason and it definitely seemed like a never ending battle. We had to play with qty and timing just to get it right = no vomits.

Anyway I feel like I could talk all day on this issue, as we have been through our fair shair of grief and to this day he is still on 30mg of Losec and 40mg of Domperidone (Domperidone is a drug to help them stop vomitting).

He is still a bad feeder with solids, but I guess he is always going to be small and I am sick of fighting him. He weighed 8.24kgs at 12 mths and he is nearly 13.5mths old and think he weighs 8.5kgs.

I also do think that the Losec takes a while to work. Lachlan was on Losec at 3 weeks of age and I still didn't feel like I bonded with him until he was 3 mths. But I do believe there was a bout of colic happening there. So that is possible with your little one too. Lachlan had terrible trouble with bringing up his wind and when he did he would vomit.

Oh one last thing, we use to put Lachlan in a tri pillow in between us in bed, it kept him elevated and helped with his night sleeping. But day sleeping was shocking and still is!!!

I have a kid that hates to eat and sleep. Grr...... But I love him all the same.

I know how you are feeling, but I just wanted to assure you that it does get better. I am just lucky that Lachlan is such a happy kid considering, because the anger he showed as a bub (he use to kick and punch me), really scared me that, that was his nature.

Goodluck and if I can help further, let me know, am more then willing to give you any more information.

[shereejoy]

Oh and Rachel, what month was Hannah born?

[Leigh78]

Mellymoo

I have just PM'd you.
I hope the info is of some help. I know how stressful and sleep deprived you must be right now.

Leigh

[Nowhere]

They all say it I know - it does get better, but that is so hard to believe that there is any light at the end of the tunnel. I was one of those, until we went to hospital numerous times and saw less fortunate kids that DO NOT grow out of their condition. This was the turning point for me, as more often then not I was so down and out about it all and stressed all the time. But hey who wouldn't be when you child refuses to feed. We went through a really bad patch at 5mths where Lachlan would not feed and would only feed half ok when asleep. So for 2 months he was tube fed due to the fact he was failing to thrive, but not dehydrated because of what I was doing through the night. From tube feeding we were then over extending his belly, so then we have been through an extended period of over extension of his belly. He would power vomit his whole bottle of 120ml. This is why we were in hospital, because initially they were not sure why these power vomits were happening. But looking back this was the reason and it definitely seemed like a never ending battle. We had to play with qty and timing just to get it right = no vomits.

Anyway I feel like I could talk all day on this issue, as we have been through our fair shair of grief and to this day he is still on 30mg of Losec and 40mg of Domperidone (Domperidone is a drug to help them stop vomitting).

He is still a bad feeder with solids, but I guess he is always going to be small and I am sick of fighting him. He weighed 8.24kgs at 12 mths and he is nearly 13.5mths old and think he weighs 8.5kgs.

I also do think that the Losec takes a while to work. Lachlan was on Losec at 3 weeks of age and I still didn't feel like I bonded with him until he was 3 mths. But I do believe there was a bout of colic happening there. So that is possible with your little one too. Lachlan had terrible trouble with bringing up his wind and when he did he would vomit.

Oh one last thing, we use to put Lachlan in a tri pillow in between us in bed, it kept him elevated and helped with his night sleeping. But day sleeping was shocking and still is!!!

I have a kid that hates to eat and sleep. Grr...... But I love him all the same.

I know how you are feeling, but I just wanted to assure you that it does get better. I am just lucky that Lachlan is such a happy kid considering, because the anger he showed as a bub (he use to kick and punch me), really scared me that, that was his nature.

Goodluck and if I can help further, let me know, am more then willing to give you any more information.


Your son sounds a bit like mt dd Im glad to here he is doing so much better, its good to here of tube feeders that manage to wean to oral feeding wo young thats great

My dd had a nissen fundopilication a major operation to stop her reflux on the 17 of april due to her dge she has still been 100 percent tube fed since then and it appears she may have undone her fundo so we had a 6 week peek into what its like to have a child with mild reflux and now we are striaght back into her having servere reflux, its a nightmare again she is even stugling tolerating her continuos feeds and is in incredable pain once again, she is having her gastrostomy surgery on friday and after that the decision will be made whether they have to re do the fundo or try feeding ehr into her intestines instead, Mikenzee was one of the unlucky ones that wasnt able to grow out of her reflux there wasnt time she was suffering life threatning complications from it, hense why the fundo was done, since her fundo she has out on a bit of weight and is now just under 7 kilos at 15 months old we are hopeing that she wont loose any in the next week before her surgery on friday, its so hard to keep weight on refluxers isnt it

So if you got any tips for me let me know

[shereejoy]

We are so lucky we didn't have to have a fundo. It was talked about thou. You poor things, what terrible times you have been through and for her to only be 7kgs at 15 months, wow she must be small. Lachlan is small, so I could just imagine. But you are wrong though in the sense that not all reflux babies fail to thrive. I thought so too, but there are more fat babies with reflux then not. Weird hey. But they don't all suffer with that food association with pain and obviously all babies have varying degrees of severeness of reflux. It is strange though my paed always told me that Lachlan just mustnt like milk and that he would be great on solids. That time came and no still not good on solids (although we have had peaks - must have been growth spurts), but now more then ever loves his milk, go figure. What makes it worse / harder is that he has always been cows milk protein intolerant too and is on a prescription formula and we have not been able to have dairy. Which makes food very limited for this very fusy child.

I am sorry I really have no advice as we have not been through the fundo process but know what it is like with continuous feeds. Can you tell me how many mls per hour she is on. I think we did 25mls per hour as that was all Lachlan could tolerate, he has never been one to vomit in his sleep and he would and his tube would come flying out of his mouth. So hard the continuous feeds, waking up all nite long to change the bottle. I hated that 2 month period that he was tube fed.

Have you joined the RISA group. I did and they were wonderful supportive people and all the mums are going through what you are.

I wish you so much luck. This just clarifies in my head how appreciative I am that Lachlan is so much better. I am sorry your little girl isn't. My heart goes out to you and your family during these trying times.

[Nowhere]

you are so rite about some refluxers not being FTT i go on a web site caller Infantrefluxdisease.com and ther are some refluxers on there that comfort feed so they are still a good weight but suffer as mush as the FTT ones

kenzees continuos feed rate now is between 20 to 45 mls an hour depending on how bad that day is she has been on continous feeds for about 10 months though apart for a small time where we tried to change that we thats a long story wont go there LOL

We are hopeing that some of the post fundo reflux will calm down after the ng tube comes out on friday when she gets her G tube but we will see i guess


what age was it when your son was tube fed and how did he get of them if you dont mind me asking, we have been told that kenzee will likely have her tube for the next 6 or 7 years i hope not but dont see how things are going to change we have to wean her onto bolus feeds first but at the moment with not tolerating cont. feeds i dont see a light at the end of the tunnel

[shereejoy]

We tube fed him from 5 to 7 months. I really am not sure how we got back to normal feeds I could never pin point the turning point, maybe he got jack of the NG tube. He pulled it out like a trillion times!!! I do know though that he was a dream baby till he was 3 weeks old and then I had a changed baby on my hands. Refused my breast at 8 weeks, expressed till 13 weeks, gave up after that, he would not go back on. He was drinking from a bottle at 8 weeks (expressed milk) but would only drink 60-80ml every 2 hours. He never stopped possiting in between feeds, but it was hard to drag him out for his feeds too. Then we went to formula and he was ok, most I could get him to drink was 110ml and I think I got him stretched out to 3 hourly. So at three months he was not drinking alot but then at 5 mths he again changed temperatment and would only drink 10-20ml and then bat it away (he was furious). That is when we tube fed him. But then at nearly 7mths we went to Riverton a feeding a sleeping clinic and I think this was when he got jack of the ng tube, cause we went there and he consistently drank 110-120-130ml which was a big improvement from where we had been. But even through that 2 mths of tube feeding I always offered the bottle first and then topped him up, but never went over 120ml feeds, he generally started drinking I guess maybe 30-60ml on his own the rest was put down the tube. So yeah went to Riverton and I was like what tha..... well don't play up now people are watchin huh! But at that point also we took the dummy off him, and I don't think this was the whole problem but definitely part of it. I think he was partially exhausting his mouth muscles and was thinking he was full. Taking the dummy away also helped him sleep better, he was a kid that if it fell out he was awake. So that was the best thing we did was take the dummy away at 6 mths of age. Does any of that make sense. Hehe.

[Mellymoo]

My goodness, I feel like I shouldn't be complaining at all - Mikenzees Mum and the other Mums that have had their child in hospital or tube fed etc: I feel so sorry for you and I am so lucky it hasn't gotten that bad with my DD. Makes me feel lucky that my DD"s reflux isn't that bad.

In the last week though, my DD's reflux seems to be settling down a bit, perhaps due to the increased Losec dosage (20mg) Took a couple of weeks to kick in though.

But now she has a cold which seems to be flaring it again - us reflux Mums can never win, can we ?!?!?!

And as for the solids - I did try her on them and I must admit I was a bit excited about it because the paed told me it would help with her reflux. I don't know whether it did or not, but I know for sure that for a few days after her solids feed, she would be extremely hard to settle to sleep and be groaning in her sleep. She did this every time after solids for a few days after. So I've taken her off the solids now, and perhaps I'll try again in another few weeks. We'll see.

Shereejoy : My DD is opposite to yours - she is now 16 weeks and a couple of weeks ago when we took her to the paed for her reflux, he weighed her and she was 7.7kg. Reflux babies can be one extreme or the other, and we have the problem where I have to watch how much milk DD has because she is in something like the 98th percentile, but she is also quite long as well, so she's in the 98th percentile for length as well. She is a big girl and the paed told me to watch her weight, but now he says because she's in the 98th percentile for everything, as well as the fact she was born big (9lb, 10oz - or 4.37kg) to not worry about it anymore, and I'm not. Also, like your baby, I have noticed my DD is quite an 'angry' baby - she flips out over the smallest thing and gets very 'angry'. She'll clench her fists and SCREAM like I've never heard a baby scream before, and it's a real angry scream too. She kicks a lot too. Poor things.

Thanks for all your help ladies !! Good luck with your babies too, it's not easy.:hugs:

[Nowhere]

mellymoo please dont feel bad complaining reflux sucks no matter what the compilcations are, its just a nasty horrible disease

i know what you mean about reglux bubs being angry kenzee is a real angry head especaily at the moment just putting her to bed last night i got a scatched eye and scatched lip litle monkey

im sorry the a cold has flaired your bubs reflucxup again that sucks we find that with miki any thing else makes it worse

do you add any thing like gastrogel when there is a flair up its not fantastic but can help a bit

[lovingmotheract]

hey shereejoy hannah is going to be 19 months on the 13th.