Reflux Mums Unite!

[hapi2bhealthy]

WELL, it's so "good" to read those stories girls. I was in TOTAL denial about Charlotte's reflux for weeks. I honestly did NOT want to be "one of THOSE mums" who bangs on about things. But reading these has made me sigh and say "well, there you go, I had a classic reflux baby experience!"

For those who are only just starting their journey, there IS a light at the end of the tunnel and I hope your LO's settle soon enough. Please don't try anything too crazy to fix their sleep, they're not doing it on purpose they're genuinely in pain!

My bubs is also CMPI/SMPI and believe me, now at 7 months, she's the single greatest thing on the planet because we have it all under control AND we responded to her while she was in pain as a tiny one.

Good luck girls, hug your little chuckers!!

(Weirdly, since starting daycare, my bub has become wayyyyyyyyy less chucky!! Woot!! )

 

[Scout]

Well, it was back to the pediatrician today bc it seems she is getting worse. He increased her zantac (altho I wanted something different bc I've read a lot of times that zantac doesn't do anything) and he put her on Carafate 5x a day to coat her throat and tummy. He said if in 48 hours she isn't any better at all to switch her to Alimentum formula and try that. After the first dose of carafate (I have to give it one hour b/4 feeding) she screamed that whole hour until feeding and then only got 2 oz in her in 45 minutes. I had to walk the floors with her as I was giving her bottle just to get her to take that much (she's up to 5 oz at each feeding but since yesterday she is refusing her bottles) She fought me all thru that feeding and in the end I think most of it came back up anyway. We were both soaked.

I'm feeling so desperate for somehting to help her. I'm not sure what a change in formula will do (we have crap formula here in the US all full of junk, even the organics aren't very good and it just makes me feel even more guilty for not producing enough milk to bf her) Anyways, guess I'm just letting off a bit of steam..been crying half the day bc she feels so bad and I cant do a thing to help her. Hope the next feeding goes better than the last.

 

[Mummyxofx2]

My little girl was diagnosed with silent reflux yesterday after a week of screaming and refusing to feed. Along with the gagging back arching. She is breast fed but now also on 2 bottles of formula a day because my supply suffered so bad because she wouldn't eat. The breast seems to make it worse than the formula has anyone else had this happen? She is on losec 5mg every 24 hours

 

[hapi2bhealthy]

My little girl was diagnosed with silent reflux yesterday after a week of screaming and refusing to feed. Along with the gagging back arching. She is breast fed but now also on 2 bottles of formula a day because my supply suffered so bad because she wouldn't eat. The breast seems to make it worse than the formula has anyone else had this happen? She is on losec 5mg every 24 hours

Breast was worse for us too, I'm pro breast however FF because it all got to a point of no return for us. See how you go and make a decision based on whats working for you as a family, you'll know when it's time to move on from BFing or to continue to try. Also need to give reflux meds a litte bit to work!!

 

[Mummyxofx2]

She started getting silent reflux just over a week ago. She is 17 days old now. At first she was great breastfeeder then started refusing feeds she would suckle on and off all day in between screaming I just did not know what to do. I took her to the doctors yesterday and he confirmed tht she does have silent reflux but did have a drop in weight because she wasn't feeding and my supply suffered greatly to the point I can only feed 4 times a day without top ups. These 4 feeds she still crys after each one and gags and chokes along with the rest but on her formula top up feeds she is back to herself so content still a little but of gagging but no crying with it. I'm going to stick to what I'm doing now for the neat week and see if the breast feeds get better if not I will have to make the hard decision to stop all together =(

 

[Conundrum]

I just posted a thread about being in a similar situation to some of you. Shylah was diagnosed with reflux over a month ago. Up until then she grew at an almost impossible rate (98-100 percentile) and now it has completely stopped this entire month, though she is still growing in length (my chubby baby is starting to look thin and it worries me) Her spitting up is increasing, her crankiness is increasing, her sleep is decreasing, her pain is increasing and the doctors refuse to do anything else until she starts to loose weight.

Thank you ladies for sharing your stories, after a day like mine it is nice to know there is still some hope.

 

[TrixieLox]

I think I belong here, not sure though. My LO actually doesn't seem as bad as other people on here cos she does feed well and is putting on weight, it's just the puking and the pain.

She pukes up about 3-4 times after every feed, especially when she's lying on her back. She also seems in real pain after some feeds, arching her back and crying. Is this reflux?

My GP doesn't seem to know. He prescribed her Infant Gaviston, but she still pukes a bit, not as much. Her poos are quite hard on it too.

A midwife I saw kinda told me off for putting LO on Gaviston and actually said 'I know cleaning your baby's clothes and sheets is a pain, but do you really want to be pumping her full of meds', like the reason I let her have Gaviston is for the inconvenience of washing her stuff?! Was so annoyed!

 

[Smanderson]

Scout have you tried omeprezole yet? My DS was on ranitidine which I think is Zantac and it didn't really help it just calmed him down a little for a few days then we would be back to turning purple screaming but once they swapped ranitidine for omeprezole he has been amazing! It's a pain in the butt cos you have to dissolve tablets and make sure the balls go in with a syringe but its once a day and then they are happy baby all day we also changed to SMA from aptamil and its going well. My heart goes out to ŷou I know how awful it is seeing them suffering and soul destroying when yet more meds don't work keeping everything crossed you find the right meds ASAP


Trixie that's awful what a horrible midwife!! My lo was sick but mostly in pain all the time. Some reflux babies comfort feed and often put on more weight because of this. My DS is on omeprezole and domperidone as he was in so much pain and he is now a different child because of if. Forget the midwife she is just ignorant I recommend speaking to your doc and asking for a referral to paediatrician or gut specialist as many GPs don't have a clue

 

[Scout]

Scout have you tried omeprezole yet? My DS was on ranitidine which I think is Zantac and it didn't really help it just calmed him down a little for a few days then we would be back to turning purple screaming but once they swapped ranitidine for omeprezole he has been amazing! It's a pain in the butt cos you have to dissolve tablets and make sure the balls go in with a syringe but its once a day and then they are happy baby all day we also changed to SMA from aptamil and its going well. My heart goes out to ŷou I know how awful it is seeing them suffering and soul destroying when yet more meds don't work keeping everything crossed you find the right meds ASAP

No. I wanted him to change her Zantac when i went in, but he wanted to increase it first to see if that helps. I have read too that there are much better meds than Zantac. I go back this coming Friday and if there is no change by then I'll insist he change it. Is omeprezole Previcid? I've heard, or read, that a lot of people have better luck with it.

 

[Smanderson]

That's the one it's fantastic I had to ask for it in the end, we went about 6 or 7 weeks with them messing about with the dosage and it made no difference so frustrating. They told me omeprezole is the third line of treatment so I think they try not to use it for a while...annoying and I expect cost ones into it too but fight your corner it really did make such a huge difference for us I really hope it can help our LO too

 

[JenX]

I have a silent reflux baby. She's only spit up a handful of times ever, but she arches her back in pain, coughs, hiccups frequently, and cries due to reflux. I cut dairy out of my diet a week ago, and today she was prescribed ranitidine (Zantac). She is a comfort feeder- she nurses frequently to soothe the acid burn, so she has been gaining impressively despite the reflux. That's why I didn't recognize what it was for quite a while. Hoping the Zantac will give her some relief.

 

[Tiger22]

My baby is constantly fussing, and wanting to eat...she sometimes will suddenly start screaming like she is in pain..she also will just be sitting there and then all of a sudden start choking on spit up and cough. Does this sound like reflux/silent reflux..? Or could it be something in my diet? But she doesn't vomit and is gaining weight well.. Took her to pediatrician several times and they aren't very helpful..they did prescribe Zantac if we wanted to try but what are the side effects of this medicine for a young baby? Is it safe? I'm going to try cutting out tomatoes and dairy and see if that helps too

 

[hapi2bhealthy]

Ah yes...the comfort feeds. These put my baby so far off the charts she was then put on a "diet". So she went from being 24 hrs away from being hospitalised with a naso-gastric tube, to being so "fat" all the drs and EC nurses were concerned about her excessive weight gain. Ridiculous.

And what about the standard "I'll sleep for 20 mins but then I'm going to wake screaming and you won't be able to lie me back down again!", anyone else deal with that? Everyone told me "newborns are portable!! They sleep all the time!!" Yeh...not mine.

 

[kit10grl]

Ah yes...the comfort feeds. These put my baby so far off the charts she was then put on a "diet". So she went from being 24 hrs away from being hospitalised with a naso-gastric tube, to being so "fat" all the drs and EC nurses were concerned about her excessive weight gain. Ridiculous.

And what about the standard "I'll sleep for 20 mins but then I'm going to wake screaming and you won't be able to lie me back down again!", anyone else deal with that? Everyone told me "newborns are portable!! They sleep all the time!!" Yeh...not mine.

This is DD she never naps. If its a lucky day she will take 20mins when Ds goes for his nap. But yes my 2 year old sleeps longer in the day than my 10 month old and has since she was about 5 months old.

 

[JenX]

We've had the Zantac for a week now, but I just can't keep her from spitting it out. We tried it in the original state the first two times - without added flavoring, she spit it out. Took it back to the pharmacy where they added grape flavor (the only one they said was "compatible" with it), and she hates it just as much. Tried pinching her cheeks together like I saw on a pediatrician's video, supposedly they can't spit when you do that. Well, she can!

She doesn't take bottles or pacifiers, so we can't use the medicine bottles or dummies. I guess I'll just have to keep trying to give her little bits at a time and hope she swallows some of it eventually? Anyone else have this much trouble getting medicine in their kid?

 

[hapi2bhealthy]

We've had the Zantac for a week now, but I just can't keep her from spitting it out. We tried it in the original state the first two times - without added flavoring, she spit it out. Took it back to the pharmacy where they added grape flavor (the only one they said was "compatible" with it), and she hates it just as much. Tried pinching her cheeks together like I saw on a pediatrician's video, supposedly they can't spit when you do that. Well, she can!

She doesn't take bottles or pacifiers, so we can't use the medicine bottles or dummies. I guess I'll just have to keep trying to give her little bits at a time and hope she swallows some of it eventually? Anyone else have this much trouble getting medicine in their kid?

Have you tried squirting it into the pouch of her cheek at the back? It's no fun givin io them Now, after 5 months of the stuff, Miss C takes it happily because she knows there's a bottle coming afterwards haha. But that's all the advice I have there as she never spat it out much. Some other mums might have better advice!

 

[hapi2bhealthy]

Ah yes...the comfort feeds. These put my baby so far off the charts she was then put on a "diet". So she went from being 24 hrs away from being hospitalised with a naso-gastric tube, to being so "fat" all the drs and EC nurses were concerned about her excessive weight gain. Ridiculous.

And what about the standard "I'll sleep for 20 mins but then I'm going to wake screaming and you won't be able to lie me back down again!", anyone else deal with that? Everyone told me "newborns are portable!! They sleep all the time!!" Yeh...not mine.

This is DD she never naps. If its a lucky day she will take 20mins when Ds goes for his nap. But yes my 2 year old sleeps longer in the day than my 10 month old and has since she was about 5 months old.

I can see by your signature your DD has had a rough trot, much worse than mine I knew a girl who has a boy with cerebral palsy and she kept telling me off for complaining about DD not sleeping much during the day because "I should walk a mile in her shoes"...but the not napping combined with the reflux/food intolerance stuff is so exhausting, and PND is directly linked to baby sleep habits, so it's not to be brushed off as nothing. That was what pretty much drove me over the edge, the constant no break, hours and hours of settling followed by 20 mins of sleep and then more hours of settling, or having the baby on me 24/7 (because night sleeping would only occur ON me, upright, on my chest). It was hard going, YES, she was healthy, but it was still hard. So combine that with your DD's other medical issues...hard work mama!!!!

 

[kit10grl]

Ah yes...the comfort feeds. These put my baby so far off the charts she was then put on a "diet". So she went from being 24 hrs away from being hospitalised with a naso-gastric tube, to being so "fat" all the drs and EC nurses were concerned about her excessive weight gain. Ridiculous.

And what about the standard "I'll sleep for 20 mins but then I'm going to wake screaming and you won't be able to lie me back down again!", anyone else deal with that? Everyone told me "newborns are portable!! They sleep all the time!!" Yeh...not mine.

Ah yes...the comfort feeds. These put my baby so far off the charts she was then put on a "diet". So she went from being 24 hrs away from being hospitalised with a naso-gastric tube, to being so "fat" all the drs and EC nurses were concerned about her excessive weight gain. Ridiculous.

And what about the standard "I'll sleep for 20 mins but then I'm going to wake screaming and you won't be able to lie me back down again!", anyone else deal with that? Everyone told me "newborns are portable!! They sleep all the time!!" Yeh...not mine.

This is DD she never naps. If its a lucky day she will take 20mins when Ds goes for his nap. But yes my 2 year old sleeps longer in the day than my 10 month old and has since she was about 5 months old.

I can see by your signature your DD has had a rough trot, much worse than mine I knew a girl who has a boy with cerebral palsy and she kept telling me off for complaining about DD not sleeping much during the day because "I should walk a mile in her shoes"...but the not napping combined with the reflux/food intolerance stuff is so exhausting, and PND is directly linked to baby sleep habits, so it's not to be brushed off as nothing. That was what pretty much drove me over the edge, the constant no break, hours and hours of settling followed by 20 mins of sleep and then more hours of settling, or having the baby on me 24/7 (because night sleeping would only occur ON me, upright, on my chest). It was hard going, YES, she was healthy, but it was still hard. So combine that with your DD's other medical issues...hard work mama!!!!

Yes very hard work. we were lucky in that being tube fed for so long through the night she was never hungry in the night and so slept through from very young so we could at least rest at night. But DS was a horrible napper when very young he also took hours to settle and I had PND with him due mostly to lack of sleep too. its awful isn't it.

 

[JenX]

We've had the Zantac for a week now, but I just can't keep her from spitting it out. We tried it in the original state the first two times - without added flavoring, she spit it out. Took it back to the pharmacy where they added grape flavor (the only one they said was "compatible" with it), and she hates it just as much. Tried pinching her cheeks together like I saw on a pediatrician's video, supposedly they can't spit when you do that. Well, she can!

She doesn't take bottles or pacifiers, so we can't use the medicine bottles or dummies. I guess I'll just have to keep trying to give her little bits at a time and hope she swallows some of it eventually? Anyone else have this much trouble getting medicine in their kid?

Have you tried squirting it into the pouch of her cheek at the back? It's no fun givin io them Now, after 5 months of the stuff, Miss C takes it happily because she knows there's a bottle coming afterwards haha. But that's all the advice I have there as she never spat it out much. Some other mums might have better advice!

Yes, that's generally the way I do it. Comes right back out. Maybe I'm not aiming far back enough?

 

[peacebaby]

So glad I found this thread. My DD is 7 was tomorrow throws up between feeds, screams in her sleep, won't sleep except on me/in my arms, naps are not more 20 mins and is always scrunching her poor little face and kicking about in pain. The hiccups go on forever! We're seeing the gp this week but when I discussed it with her while I was there to see her for myself she said virtually every baby she sees now has reflux and she thinks its because they're gulping their feeds.

Whatever it is I'm exhausted and can't stand to see my little one in pain. We're EBF and i know its nothing i'm eating because i got ill and couldnt eat anything but dry toast and water for 3 days. She still refluxed. It seems the meds are trial & error and don't always work for everyone. Are there alternatives?