Silent reflux/CMPA hell

[Dugi3]

My 3 week old little boy is struggling so badly and I feel completely at a loss as to how to help him, as well as being emotionally and physically drained from the constant high pitched, spine tingling shrieking that is constant for hours on end.

He was prescribed nutramigen formula with carobel however after only a few days had become so distressed that he was again switched to neocate with carobel. This still showed no signs of improvement (although I understand it is early days) alongside lansoprazole.

I dont really even know what I am looking for from this post, maybe some other peoples experiences or maybe just to let out how drained and useless I feel for my son. I sob with him at every feed, he screams until he exhausts himself for two hours after feeding, by which stage he is nearly due another bottle and we do the cycle again. The doctors have said it could see weeks to see improvement...I just dont know how I will maintain this with no sleep, barely any time to eat and watching him in pain. We have tried all the usual advice for silent reflux but nothing seems to be working for him.

I have good family support and my husband helps as much as he can when home from work but nothing can take away that feeling as a mother when you hear your baby cry in pain, it is soul destroying. I feel absolutely awful for feeling that whilst I love him and he is a very much wanted addition to the family, I just cannot enjoy him at the moment.

I have been there. It's a horrible thing. Like you say, there's nothing worse than hearing your baby cry in pain. It will get better, I promise. DD had very severe reflux, so bad we ended up seeing specialists, having lots of tests done and she was on four different medications at one point. And then it got better. Weaning helped. She still struggles with allergies (she's 1.5ish now) but the reflux hell is finally behind us. Good luck

I’m so sorry you are going through this. I’ve been there too. Please remember it will get better, all you can do in the meantime is be there For him... even if it seems you can’t help you’ll be making him feel better just by being there with him. It sounds like you are doing all the right things. Definitely try and get some rest in the day when he’s sleeping, I know it’s patronising to say but everything seems so much worse when you’re exhausted and that little bit of sleep might just help you get through. I’m sure you’re doing amazing.

Also remember for lots of babies, reflux passes very quickly!! 🤞🏻

I know how you feel. My DS is now 6 months, but we went through hell from 6 weeks old to get him diagnosed with CMPA and silent reflux. He's on Nitramigen LGG with carobel and also on lansoperazole. It took a few weeks for the nutramigen to make a difference but we saw a quick difference (about a week) when we started the lansoprazole.

He used to scream and cry in pain a lot, but he's so much better now. He also got feed aversion, associating the bottle with pain, so struggled so much to get food down him. Unfortunately its that line everyone hates but with time it gets better!

Keep smiling and powering through, you will get through this!

Thank you all so much for your replies, it is reassuring to know that time will make this better, I guess it is just hard to imagine that when it seems so bad at the moment. I have everything crossed that we start to see results from the lansoprazole soon!

Yes I’m sorry, I really hated it when people said just give it time but it really is true.

My baby had severe silent reflux and was prescribed Lansoperazole, which worked to an extent, but honestly, time was the biggest factor in improvement. She turned a corner at about 4 months and then after weaning (early on paed’s advice). Sitting up at 6 months also helped hugely.

I totally understand how awful those early weeks and months are with a constantly screaming baby - it tipped me over into severe PND. It won’t last forever, but it really feels like it will at the time. Those first 6 months were the longest of my life but now she’s a lovely, happy toddler and unrecognisable from the sorry little thing she was as a newborn.

Do anything you can to survive and take each day at a time. It will improve.

Thank you so much for your supportive reply. You are right it does feel like it will last forever and at the moment I am taking one feed at a time and trying to get through. I just long to see his true little personality that hasn't had a chance to shine through yet due to the pain so it is lovely to hear that you have a happy healthy toddler.

Your situation sounds very similar to mine, I am struggling to differentiate whether I am just extremely tired (also have a 15month old at home) and concerned causing the endless stream of tears or whether I have crossed that line and need some help from the GP. The sound of the screaming physically makes my chest feel tight it is so difficult to describe unless you hear it first hand.

I now have a very happy one year old too, who is a big eater!! He was on omeprazole for about 6 months but as PP said, I really do think time was the biggest factor. He needed to get a bit bigger so that his oesophagus was longer, basically!! As PP said do whatever you need to get through each day, rest when you can, accept help when you can, eat what you want and when you can!!
Definitely speak to your GP if you are worried about PND, they will be able to keep an eye on you and point you towards support! Please don’t just keep on feeling awful, reflux is bloody hard!!!
Also, there are some fb groups you can join for parents of babies with reflux and I found them amazing for solidarity!!