Struggling! Baby cant lie down - silent reflux

[lgc]

My 9 week old little boy (born at 32+3) has got to the point where he can't tolerate lying down at all. From his symptoms (screaming/arching back/stuffy nose/ coughing/gagging/sticking tongue out etc etc) the Outreach team/ consultant are pretty sure he has a cows milk allergy resulting in silent reflux. We used to be able to put him down as long as we sat him up for 30 mins after a feed, now basically we're lucky if he can tolerate lying down for 10 mins after 3 hrs!!

We've started Nutramigen (lactose free hypoallergenic formula) 2 days ago, but have been told it can take 2 weeks to see if it works. We already thicken his feeds. He's not been started on ranitidine yet but this is an option if nothing improves. They may also try neocate formula if this one doesn't work.

I know I just have to ride it out and it will eventually improve but Im really struggling, Im hardly sleeping as I have to hold him all the time (generally end up staying up till 5, husband then gets up and I get 3 hrs sleep before he goes to work). I know some people sit their babies up in bouncy chairs but he's still too small and ends up all scrunched up in the middle (he's an IUGR baby and weighs 4lb 12 at term, stopped putting weight on a few weeks ago as he spends so much time crying / writhing around).

Ive tried his car seat (built up with towels etc) but he still screams after 10 mins. I'm feeling trapped in the house as I cant put him in the pram to go anywhere. I do have a sling which he sometimes settles in but not always.

A few people have implied that it is behavioural and I have taught him not to be able to lie down but I feel he is too young for this (1 week corrected). I feel like people dont believe he has silent reflux because he doesn't actually throw up. I end up feeling guilty incase I have brought it on myself, and I should just be worried about him rather than worrying about myself. I also feel guilty as this all started happening when I stopped expressing and moved to full formula - maybe if i'd tried harder my milk wouldn't have dried up.

Im not really looking for advice - I know I just have to ride it out, Im just worried we'll wait the 2 weeks and it wont work, try something else for 2 weeks and it'll just keep happening and I'll just get more and more frustrated and sleep deprived. Just felt I needed to vent my frustration!

 

[Kiki09]

My lo was diagnosed with severe cows milk protein allergy and reflux early on, I remember how hard it was at the time. We saw a cranial osteopath, she was amazing, He was put on Nutramigen, gaviscon and ranitdene, he improved a lot, the screaming stopped immediately after seeing the osteo. We also raised his cot at the head end and same with his Moses basket, this made an unbelievable difference. I know how hard it is right now but once they sort his milk out he will be like a different baby.

Sending you Lots of just make sure they sort his milk, if you don't feel it's working stand your ground, they can be reluctant to try the other options as they are more expensive.

 

[JadeyB]

Ah hon,

I really feel for you. My little lady has terrible reflux. She doesn't scream in pain that much but instead has breathing problems when laid too flat (goes blue and has apneas). She is currently stable, touch wood.

We had it under control with drugs for about 3 weeks (ranitadine, domperidone, omeprazole and gaviscon). She then started to have blue episodes despite being on max doses of all meds.

We have now scrapped all the meds apart from omeprazole (which is the one I felt really helped). I honestly don't feel ranitadine or domperidone helped at all (but all babies are different). They stopped me breastfeeding and put her on neocate, thickened with carobel. She improved within 3 days had a couple of dodgy days and has come on leaps and bounds 3 weeks down the line.

And no, you've not got him in bad habits or spoilt him. He is in pain! I didn't realise how miserable my little lady was until I see how happy she is now. I thought she was just a bit of a grumpy baby! Lol

You are on the right track, sounds like they are doing all the right things. Unfortunately they try the cheaper options first. I heard the difference in price between nutramigen an neocate is £27 per tin! £36 v £9. If ranitadine doesn't help, I'd ask about omeprazole.

Please don't beat yourself up about breastfeeding. I managed to establish breastfeeding but still had to give up because of CMPI. I could have cut out a dairy (I had started to) but there wasn't time and there is no guarantee it would help (or so I'm told).

What is your son's milk thickened with? I find carobel so much better than gaviscon. Is his bed on an angle? Www.babyreflux.co.uk have some fab sleep solutions. 30 degree wedge and snooz wrap might help him if 15 degree doesn't do the trick. I sleep my DD on her left side as i was told by neonatal nurse that is a good position for reflux. (although slightly against the rules) I use a sleep positioner with a 15 degree wedge and cot is also on next directories!

If you have any questions or need support, I'm quite new to reflux but am in a similar boat.

Hope that helps. Xx

 

[JadeyB]

P.s. I virtually never lay her flat. When she was small I carried her loads and now she is bigger I'm finding it easier to positioned her upright.

I dont feel guilty about spoiling her at all! Anyone who has something to say can do one. She now self settles in her crib.

She is only 3 1/2 months corrected so won't be long for you too. Big hugs. Xx

 

[lozzy21]

What kind of sling do you have? It could be the style rather being worn.

 

[lgc]

Thanks for your replies!! So nice to feel other people know what you're going through!

We've had the moses basket & pram elevated (on old uni books - knew they'd come in handy one day..!) since we came home, weve recently bought a wedge and even elevate the changing mat - try our best to keep him on an incline at all times, although not always easy as he's a little wriggler!

Kiki09 - I'd heard that cranial osteopathy can be effective. I must admit I was a little dubious but just down to my own ignorance as I don't really know what it is, and I have read posts by many people who say it's really helped. What did the treatment entail? Was it expensive?
How long did it take for you to notice a real difference with the nutramigen / rantidine? Really glad things have improved for you and your little man!

JadeyB - Gosh the apneas must be scary & stressful! The consultant said we might add in either ranitidine or omeprazole - not sure how they will decide. Do they always try ranitidine 1st? Were using 'Thick & Easy' to thicken his feeds. Seems to mix ok. Nutramigen is a lot thinner than the previous formula we had (Nutriprem 2) so we may need to add more thickener.We get the feeling he finds it more difficult to digest the thickened feeds, but its difficult to know whats the CMPI.
The wedge we have is only a 15 degree one so maybe we'll try the 30 degree and sleep positioner - is it the Snoozz sleep wrap you have?
So glad your little lady is a lot happier now.

lozzy21 - were using a hugabub stretchy wrap. I did quite a bit of looking around and seems to be the only style suitable for teeny bubbas. Its really comfy for us both but its a bit of a faff to put on so when he doesnt settle its usually because Ive not got it on quite right as Im rushing if he;s screaming, or he's so uncomfortable that I cant settle him anyway. I guess like everything practice makes perfect so I need to practice putting it on better x

The outreach team are ringing on Monday to see how were getting on and to decide whether to add in ranitidine (or omeprazole). My gut feeling is we should try it. One of the other symptoms that lead to the cows milk allergy diagnosis was a facial rash (I though was just baby acne). It happened to almost clear before we switched milks, but now seems to have come back, only milder - any experiences with facial rashes?

Thanks again ladies x x x x

 

[AP]

Lgc in Regards to meds I would say ranitidine or domperidone first. Omeprazole should be a last resort, there's nothing else beyond that if LO outgrows that.

 

[lozzy21]

Try putting him in it while he's calm too, are you putting his legs in or out? It does seem like a faff bur the more you do it the easier it gets, I can get my LO in a front carry in a woven wrap in about 3 mins.

 

[JadeyB]

Thanks for your replies!! So nice to feel other people know what you're going through!

We've had the moses basket & pram elevated (on old uni books - knew they'd come in handy one day..!) since we came home, weve recently bought a wedge and even elevate the changing mat - try our best to keep him on an incline at all times, although not always easy as he's a little wriggler!

Kiki09 - I'd heard that cranial osteopathy can be effective. I must admit I was a little dubious but just down to my own ignorance as I don't really know what it is, and I have read posts by many people who say it's really helped. What did the treatment entail? Was it expensive?
How long did it take for you to notice a real difference with the nutramigen / rantidine? Really glad things have improved for you and your little man!

JadeyB - Gosh the apneas must be scary & stressful! The consultant said we might add in either ranitidine or omeprazole - not sure how they will decide. Do they always try ranitidine 1st? Were using 'Thick & Easy' to thicken his feeds. Seems to mix ok. Nutramigen is a lot thinner than the previous formula we had (Nutriprem 2) so we may need to add more thickener.We get the feeling he finds it more difficult to digest the thickened feeds, but its difficult to know whats the CMPI.
The wedge we have is only a 15 degree one so maybe we'll try the 30 degree and sleep positioner - is it the Snoozz sleep wrap you have?
So glad your little lady is a lot happier now.

lozzy21 - were using a hugabub stretchy wrap. I did quite a bit of looking around and seems to be the only style suitable for teeny bubbas. Its really comfy for us both but its a bit of a faff to put on so when he doesnt settle its usually because Ive not got it on quite right as Im rushing if he;s screaming, or he's so uncomfortable that I cant settle him anyway. I guess like everything practice makes perfect so I need to practice putting it on better x

The outreach team are ringing on Monday to see how were getting on and to decide whether to add in ranitidine (or omeprazole). My gut feeling is we should try it. One of the other symptoms that lead to the cows milk allergy diagnosis was a facial rash (I though was just baby acne). It happened to almost clear before we switched milks, but now seems to have come back, only milder - any experiences with facial rashes?

Thanks again ladies x x x x

I think they usually try ranitadine first. I've heard it works well for lots of babies, so I hope it does for your little guy. We were on both ranitadine and omeprazole for a while and that's not recommended.

My little lady also saw an osteopath and found it really helped. It is £60 a session. Although it's good, I probably wouldn't have done it if we had to pay. It's covered by our health insurance. I think ours is an expensive one!

A couple of things she suggested to us. Colic calm - the box says 1/4 - 1/2 dose before each feed for reflux and that seems to be helping. She also recommended probiotics. Not put it to the test yet as I only ordered a couple of days ago. It puts the good bacteria back in the gut to make it more effective. I think this is particularly beneficial if your LO has had antibiotics as it kills all bacteria good and bad.

We have a snooz wrap but haven't used it yet as couldnt get a 30 degree wedge for her crib and the mattress is too thin to wrap it round. Thinking of buying a 30 degree wedge for her cotbed. I just worry that she'll want to wiggle around and won't be able to. The trouble is that when she wriggles off her wedge she starts to rattle with her breathing. Xx