Reflux/CMPI/"colicky" baby support thread

[JumpingIn]

So little guy is 5 weeks and still struggling terribly with his reflux and gastric issues. He is on Gaviscon and Ranitidine and I have now started a dairy-free diet to avoid proteins in my breastmilk. Anyone else in the same boat?

His biggest problems are sleep and belly pain. When awake he crumples up in pain, especially during and after feeds. The pain seems to hit him suddenly. When he's alseep he's crying out with pained/refluxy noises every 5 minutes. Then of course there's the wind, and recently, mucousy nappies. None of us can sleep at all. Oh, and feeds are ridiculously erratic and he's massively fussy, doesn't latch well, keeps coming off the breast, takes mini snack feeds etc because of the discomfort. We did try him on Neocate but that's when the mucousy nappies began so we stopped and went back to breast.

His crib is at a 30 degree angle, we keep him upright after feeds, following all advice.

We're both feeling our bond with him is being compromised living like this All we get to see is a little boy in pain. I also think he might be developmentally behind a bit because he's spending so much time with discomfort that we can't do eye contact, playing etc. Even bath time is rare. Definitely no sign of smiling or anything yet.

Diet-wise, eliminating dairy is really tough as I already can't have gluten and don't eat red meat.

Can anyone relate to any of this at all? Through the exhaustion we can't help but wish we had a more "normal" baby, for his sake as well as ours. He's not enjoying being here at all

 

[VickyLou]

I feel your pain hun. My daughter is now 7half months old but the first 12 weeks were hell on earth. She suffers with severe reflux and has since birth. Ranitidine and gaviscon did nothing for her. She now as omeprazole oral suspension but it can only be prescribed from a paediatrician. Do you have one? If not ask your doctor for a refferal. My daughter wouldn't latch on so had to give her formula. She was on aptamil for 9 weeks until the doctor finally listened to me and gave her nutramigen AA for cows milk protein allergy. It's a hard one to deal with cause baby is always in pain. To be honest we found nothing helped her until she was on the new milk. Didn't matter if she slept upright, winded every oz, kept upright for 30 minutes after a feed. Non of it. The best thing if you want to carry on breastfeeding is to eliminate all milk from your diet. Will be hard for you if you don't eat meat and gluten. Sorry I can't help with that.

It does get better though, you baby will become pain free it just takes time. Then weaning starts. That's the fun I'm having now cause not only can she not have milk products you will find there are other allergies too like wheat and gluten. Prepare yourself for a very long tiring journey. The good days do eventually become more and more though.

I truly hope your little one gets better very soon so you can enjoy him. If you have any questions just message me I'll be happy to help. Xx

 

[Breeelizabeth]

Hugs hun. I feel your pain.

DD was diagnosed at 3 weeks with reflux and started on Losec, was taken off it as it made her sicker. There was just something about her. People around me kept telling me she wasn't 'normal'. At 6 weeks we discovered some heart problems (which are yet to be diagnosed) and at 8 weeks was admitted to hospital as she started to lose weight (due to reflux, mpi and sucking and latching issues) and admitted again at 10 weeks for suspected congestive heart failure which she luckily didn't have.

At 3 months we got a diagnosis of Failure to Thrive and put on a semi-hypoallergenic formula Alfare. She soon gained an intolerance to that and was back in hospital. She's now on an amino acid based formula Neocate and has been for 6 weeks. Unfortunately we've seen no weight gain since then either so deep down I know something else is going on.

She's on Nexium for her reflux as well as mylanta. Might be worth a try to give a preventative on top of the daily med to help.
The reflux has slightly improved now that we're on solids three times a day (at the advice of the dietician)

 

[coz]

I can relate to this my first born had colic and reflux, he was on infacol and gaviscon and gripe water but nothing really helped, he would only sleep in his bouncer. Now we have a 4 week old and we are lucky he doesnt have colic but does have reflux and also doesnt sleep for long but is more content than our first as he doesnt have colic. The advice i have for you is i heard colief works the best for colic , google different winding techniques to try and help get rid of wind. For reflux try and keep baby upright when feeding and for a while afterwards also our second now wont sleep flat either so is only sleeping in his rocker too. I also just tryed cutting out dairy but realised it didnt make a difference so i think with mine it is just reflux x

 

[Lolly1985]

Gaviscon and ranitidine didn't work for us. My little boy was on max dose of omeprazole and Neocate hypoallergenic formula. It worked adequately. The pain was controlled (main thing) but his weight gain was terrible and he developed a feeding aversion to milk after weeks of agony while meds were adjusted. His stools went green and mucousy too but our consultant told us it was something to do with how the formula was broken down and something to do with bile...?! But basically not to worry. I remember the endless screaming at night and feeling helpless. My heart goes out to you. We were in and out of hospital 9 times tweaking medicine. Whether it was that or time I don't know but it did get better. Big hugs to you and LO

 

[captainj1]

I had this with DS and I totally empathise. Time was the only thing that 'worked' for us really, in terms of major improvements. I kept hoping for that overnight 'different baby' other people talk about, but it was a gradual thing. I think as well as the cmpi and reflux he was a very determined and persistent baby and also clever as he knew that he couldn't do anything on his own, he needed someone to be with him, preferably someone with a food source (ie me!). The thing that helped the most, and I'm trying to do this time around with my DD, who whilst not cmpi (at the moment) is also a screamer who fights sleep all day long and hates the car/pram and won't be put down, is to choose to interpret things positively. So rather than thinking, oh he's a stubborn little bugger I wish he would just stop screaming and sleep, I would think 'he's so determined and persistent, he's going to achieve so much in life!'. And when he wouldn't sleep, I'd think 'he is so alert, so nosy. He just wants to learn, he's going to be so intelligent!'. And even silly things like when he fought the breast, I'd joke with him that I didn't do beer unfortunately and that milk was all I had available.
I'm sure this sounds silly but it really made me feel better. That, and to stop googling 'high needs baby', as unfortunately there is no miracle cure.
I now have an amazing, determined, intelligent 4 year old who is also the kindest, most empathetic, well behaved little boy who sleeps well. We didn't have terrible twos and have never needed a naughty step. It doesn't last forever, it just feels that way at the time, I remember how desperate I felt. Good luck and remember, you are doing your best, and it is good enough xxx

 

[captainj1]

Oh and don't forget, the whole reason babies are so cute is so that they survive the first 6 months. 😊 it's ok to swear at them under your breath and threaten to throw them out of the window, just don't actually do it...!

 

[captainj1]

The one thing I found helped massively was getting DS to take frequent naps. Because he was so damn grumpy all the time, it was hard to see any tired signs. But he was so alert he needed to sleep after 30-60 minutes of awake time at your DS's age. He was impossible to put down so initially I rocked him to sleep and he slept on me, after a few weeks I cancelled any appointments I had and spent three weeks teaching him to nap in his cot. He only napped for 45 minutes and it would take 90 minutes or so to get him to sleep sometimes, so it was hard work and mind numbingly boring to do but it helped his mood hugely. I used all the sleep props under the sun - dummy, white noise, swaddle, blackout blinds, shush pat etc. with DD this time around I'm just letting her sleep on me as I don't have time to spend leaning over a cot with DS around. Again a mindset thing is that with DS I thought maternity leave was going to be nice and relaxing, going out for walks/coffee with a baby sleeping peacefully in a pram or in the car - neither worked for my son nor do they for my daughter. The reality is that maternity leave is bloody hard work, the hardest I've ever done and I have a high profile job working 60+ hours a week and travelling internationally at least once a month. I was relieved to go back after DS. I don't feel quite the same this time around as I had different expectations - I knew I just don't make placid babies and expected it to be hard work that doesn't really come naturally to me.

Good luck hon and hang in there. It doesn't last for ever although it sure feels that way when you're in it and sleep deprived. Xx

 

[dan-o]

Checking in with my 3rd colicky refluxy windy baby
I think we also have a cmpi again but not so bad as my second who projectile vomited if I ate any dairy!!! I was vegan for a year!

We have lip tether and tongue tie this time, but not as bad as my first (who had to have his cut to allow a latch) so we are just seeing how he goes for now. X

I finds lot of the symptoms start to resolve as baby gets bigger. The fussing and apparent pain when pooing tailed off by about 12w with my other two.

Have you checked for tongue tie just in case that's causing the colic?

 

[Wnt2beAMom]

Captainj1,
Your son sounds like my little guy. He always seems cranky and I think he needs more sleep but fights it!

It's good to hear he turned out well though

I'm excited to see what kind of toddler my DS will become. He has a strong personality I can tell already!

 

[Breeelizabeth]

Oh and don't forget, the whole reason babies are so cute is so that they survive the first 6 months. 😊 it's ok to swear at them under your breath and threaten to throw them out of the window, just don't actually do it...!

Hahaha!! Charlotte's Paediatrician said the same thing to me. He said tell her how stressed out you in a happy, sing-song voice! The whole reason they smile is so we don't lose it with them (and they always smile at you at the time when they've given you the most grief!)

My favourite line is "I love you, but I don't love your behaviour"

 

[JumpingIn]

Thought I'd give a quick update and thank you all for the amazing advice and support. I'm so glad we're not alone with this.

Zach is now 9.5 weeks and things have changed an awful lot. We've ended up in hospital more times than I can count as he stopped sleeping all together... He's desperate for sleep but reflux will wake him every few minutes as he chokes and gags. Twice he stopped breathing properly and I had to slap him.

We began Omeprazole 3 weeks ago and we're already on the maximum dose. This seems to have helped his pain when awake but has done nothing for the sleep issue and also makes his wind a million times worse. We were also advised to switch from breastmilk to Neocate again after my elimination diet didn't help him and I started losing weight rapidly.

Today we begin Domperidone. If this doesn't work I have no idea what to do next.

In an average 24 hours he is getting about 3 hours sleep, all in catnaps and whilst being held vertical and rocked.

I'm totally shattered. I'm pumping too because the thought of my milk drying up over a hunch he may have allergies really upsets me.

We finally got that smile from him and during the day, despite being constantly exhausted, he's doing surprisingly well. But he needs sleep

Sorry for the big moan. Your posts have been invaluable and have us lots to think about. We rarely hear anyone talk about reflux this severe so it was refreshing to hear some of you have been there. I've definitely been trying to frame things more positively too, especially as this is clearly just a physical ailment, nor behavioural. He's a lovely little chap when he's not choking or in pain.

 

[JumpingIn]

Oh and he did turn out to have tongue and lip tie. His tongue wad snipped which helped his latch a bit while I was still feeding but unfortunately did nothing for the reflux. It was well worth a go though

 

[captainj1]

JumpingIn it sounds as though you are doing absolutely everything you can, hang in there it will get better and keep reminding yourself that you are doing great with a difficult baby. Don't compare yourself to anyone else as they aren't in your situation. Just keep following your instincts. When your little man is older he won't remember, although you will. Xx take care and please update us whenever you can xx

 

[hlynne]

Oh Jumpinin you have gone/are going through a heck of a lot. I really commend you for finding the positive in all of this. I hope your little man starts getting the sleep that he needs soon. I'm glad you got that smile out of him that you wanted too!

This too shall pass.

 

[Rainbow82]

Thought I'd give a quick update and thank you all for the amazing advice and support. I'm so glad we're not alone with this.

Zach is now 9.5 weeks and things have changed an awful lot. We've ended up in hospital more times than I can count as he stopped sleeping all together... He's desperate for sleep but reflux will wake him every few minutes as he chokes and gags. Twice he stopped breathing properly and I had to slap him.

We began Omeprazole 3 weeks ago and we're already on the maximum dose. This seems to have helped his pain when awake but has done nothing for the sleep issue and also makes his wind a million times worse. We were also advised to switch from breastmilk to Neocate again after my elimination diet didn't help him and I started losing weight rapidly.

Today we begin Domperidone. If this doesn't work I have no idea what to do next.

In an average 24 hours he is getting about 3 hours sleep, all in catnaps and whilst being held vertical and rocked.

I'm totally shattered. I'm pumping too because the thought of my milk drying up over a hunch he may have allergies really upsets me.

We finally got that smile from him and during the day, despite being constantly exhausted, he's doing surprisingly well. But he needs sleep

Sorry for the big moan. Your posts have been invaluable and have us lots to think about. We rarely hear anyone talk about reflux this severe so it was refreshing to hear some of you have been there. I've definitely been trying to frame things more positively too, especially as this is clearly just a physical ailment, nor behavioural. He's a lovely little chap when he's not choking or in pain.

It sounds like you are going through an awful lot and I hope that the Dr can find something to help your son soon. Our son has only just been diagnosed with reflux but it seems to be getting worse by the day.
Have you tried wearing him in a sling during the day? It is something that helps my son to sleep during the day as it keeps him upright and close to you so he feels comforted and helps with the gagging/choking. Sorry if you've already tried this and I missed it.

 

[captainj1]

I'd second the sling, although my son hated it. It's been great with getting my dd to sleep in the day, albeit I can't nap when she's in it and she usually wakes if I try to sit down. She weighs a stone now so it's hard going! X

 

[JumpingIn]

Hi all and thanks again for your lovely posts. I need that support more than you could know!

Zach turned out to have a neurological reaction to Domperidone and it had to be stopped immediately. Since those few doses before we made the connection he has screamed and screamed. So much for that.

It seems like we're at the end of the medication road. I've been keeping meticulous logs of his sleep and it's massively depressing. On average in a 24 hour period he tries to sleep 25 times. The average (mean) sleep duration is 13 minutes. That's day and night. He's up an average of 10 times a night. The longest he has slept is 2.5 hours (once) The shortest is 30 seconds. Most often it's around 10 minutes. The average frequency of loud reflux noises and gagging during sleep is every 4 minutes. During the day he sometimes manages no sleep whatsoever. When you add together all the tiny fragmented sleep attempts he's getting anywhere from 1 to 10 hours in 24, but obviously he never really achieves proper sleep cycles so I'm not sure that really means anything.

My gp has offered to admit him to hospital but I'm really scared to take him away from home and even more scared we'll just get fobbed off and told we're paranoid parents as we have so many times now.

If this seriously is just reflux it must be one of the worst cases. But he's gaining weight (because he comfort feeds every 45 minutes) That's all most doctors seem to care about.

 

[myra]

I'm so sorry jumpingin. I don't know how you are getting though this terrible time- for all of you. My 2 year old son and now my 3 month old daughter had reflux/CMPI/soyallergies. There were occasions with both kids that I wanted to give them away (though never would) since I didn't know how I could handle another minute of hell, let alone another day...and as bad as we've had it, you all are going through so much worse. I wish could give you advice but I don't think there's anything we've gone through that you haven't tried-so in here to send you hugs.

Can you get a consult from another doctor? Have you seen GI specialist for your son?

What really helped us advocate for my son was a book I read called Colic Solved by a pediatric GI doc in Texas. He said there's no such thing as colic and that even the most severe cases brought to him were treatable with an underlying cause of reflux, CMPI or both. I know it's a huge long shot but wonder if someone like that would be willing to do a Skype consult. Also, even if people think you're paranoid parents, it might be worth it to admit Zachary to the hospital a) so medical staff can see first hand that you're not paranoid and just how bad it is and B) to possibly give you some small amount of respite.

In the end what helped both my kids were the highest doses of ranitidine and omiprezole (at the same time) and coming off breast feeding to go on Similac Alimentum (with my daughter I'm still nursing twice/day and have been dairy/egg/soy free for 6 weeks. My son was more complex and even elimination diet didn't help him). My kids also ate constantly, I think to soothe their pain in their throats. My son was 30pounds at 8 months old and my daughter is putting on a pound per week. My daughter started to turn a corner about 2 weeks ago...and today she actually had 4 30minute naps during the day.

If I can answer any questions, please let me know. I'll keep checking back in here to see how you're doing.
My thoughts and prayers are with you all

 

[myra]

You may have tried these as well to no avail but thought I'd pass along just in case...

The only way my son would (eventually)sleep in his bed (versus in a baby carrier while I walked or while laying on me in a rocker) was on his stomach. We hit a point that it didn't matter that everyone said babies had to sleep on their back, we had to try it since none of us were sleeping. It worked. In the beginning, it would maybe get an hour of sleep before he woke, ate, held upright for 30 min (all while hallucinating from exhaustion) and then back in bed for another hour to do it all over again. Eventually though he went for longer stretches at night and 2 hour naps in the day.

My daughter hated the baby carrier until I faced her outwards...now she'll go in about half the time without screaming. For sleep, we have her in the Rock and Play inclined sleeper.

Are you able to get your son to take the meds? Our kids wouldn't take them from the syringe without spitting out, so we followed the lead we got while our son was in the NICU and mixed meds in a bottle with an ounce of formula- even if meds said to take on an empty stomach 20 minutes before a meal. Still worked, even when followed immediately by a full bottle.

Try looking on YouTube for "colic dance" or "colic four step"- can't remember the exact name but we happened upon it with my son, and the motion helped soothe both kids.

If I think if more suggestions, I'll let you know...you prob have tried dozens of things already, including some of these. Wish I could do more to help. Just know that you are not alone and that there are others out here going through some level of what you're dealing with. You're not paranoid or over reacting. I believe it's every bit as hard as you explained, and then some.