GERD

[Chlovereve]

My 8 week old has been diagnosed with GERD and CMPA after a hellish few weeks and multiple different trials of milk. He is now on Nutramigen Pure Amino which seems to have had a huge improvement on most of the CMPA symptoms, however his reflux has worsened since starting this milk. He cries for hours on end, screams during feeds when trying to burp, after feeds and barely sleeps or is settled for more than an hour before screaming again. I’m becoming extremely depressed as I cannot seem to get anything done, feed myself, have a conversation with my partner or even leave the house due to how unsettled he is.

He has been prescribed Omeprazol but I am struggling to get it into him - I’ve tried a syringe, have tried to administer whilst he sucks his dummy, have tried mixing with additional water once dissolved and giving to him in a bottle (as per HV advice) but he either spits it all out or throws it up instantly. Can anyone give me some advice on how to get through this? Peads tell me to persevere but I am really at my limit with this, it’s making me severely depressed and exhausted due to the constant crying, I find myself crying multiple times a day and unable to enjoy anything anymore as I spend all day and night desperately trying to soothe my poor baby who is clearly in pain and discomfort. There must be another solution?

we have tried Gaviscon previously but it made him very constipated, however I am tempted to give it another go if I can’t figure out another option.

please give me your experiences and advice on how to manage this, I am feeling desperate and don’t feel there is any help from medical professionals.

I could have written this myself! I have no medical advice, just my ongoing experience.

I have a 12 week old little girl and the past 10 weeks have been the most exhausting time of my life and not for the ‘newborn lack of sleep’ reasons.
We had a massive massive battle with the doctors from the start, every meal she would grip in agony and struggle to wind, she was severely constipated and would not settle out of our arms- even in our arms she wasn’t happy, just had some comfort!

Very very long story short i fought for weeks on end with the GP as i suspected CMPA, she is my first but i knew through my own research and a friend she had all the symptoms.
We tried different formulas, gaviscon, infacol and gripe water and nothing made her even slightly better. We spent hours crying, both me and the baby! Boyfriend returned to work and id ring him in floods of tears because i hadn’t been able to put her down for the toilet or even to have something to eat, he would come home and id be sat there in the same pj’s covered in baby sick, hair a complete mess, cried up and id have had no food/drinks! Id not even had the chance to sterilise any bottles!

One night i was so heartbroken i phoned 111 and asked for advice, i got an out of hours appointment and the out of hours GP instantly agreed CMPA!

Our girl is on SMA althamino, it helped her CMPA symptoms but made her reflux 10x worse because the formula was so thin, we have to mix it with carobel just to keep the formula down!
She is also on omeprazole, at first she was on the lowest dose and it had no improvement- she’s now on 5ml a day and so far, we have something good happening!
We are on the liquid form of omeprazole though not the tablets we need to dilute ourselves- maybe push for this version instead? Peads doctor told me that it’s harder to get prescribed as one bottle costs almost £200 and the bottles only last 28 days…. I was so shocked that babies would suffer for price!
Also make sure the dose is monitored properly, as baby grows so does the dose! Our girl is only 11 pounds at 12 weeks (very tiny birth weight) but the GP tried to keep her on 1ml which was absolutely ridiculous!

I give ours via syringe, it’s hard because it takes her breath but i put the syringe towards her cheek and squeeze, she usually takes 1.5ml before realising but then I instantly give the dummy and she swallows the liquid but sucks the dummy out of frustration, i give her a few minutes then try a bit more- it does take a while but im happy to just get it down her!

It’s very early days (and i don’t want to jinx it) but in the last week we have just started been able to put her down in the next to me, we have this tilted too so her head is slightly higher than her tummy!
She has started to sleep for three hours at a time and before we couldn’t even lay her down without her throwing up, we even have a smiling baby who has stopped crying long enough to play with her play mat and she has started to sit in her bouncer whilst i get little things done in the house, or just have a bloody drink!

Things will get better, we aren’t too far ahead of you and trust me the change in our girl is unbelievable. I know how it feels to be at breaking point though, please speak to people and accept some help if you are lucky to have some- i never did and never allowed anybody to take the baby even for an hour for me to catch up on sleep snd looking back i should have done.

Hopefully things start to improve for you too soon! X

Thank you so much for the reply! Sorry you have been through this as well but reassuring to know I’m not alone, too.

I had gone back to the GP who prescribed the liquid form of Omeprazole and what a game changer that was! He takes it all in and although he is still sick quite a bit, it was a drop in the ocean compared to before.

I had been referred to a dietician however I don’t feel their advice has helped me at all! Sounds like my baby is similar situation to yours, also low birth weight and not even 11 pounds at currently 11 weeks. The dietician has prescribed the tablet version again at a different dose according to his weight, however it’s a nightmare to give the tablet and they refuse to prescribe the liquid version - I think I’ll have to go back to GP for that as he is the only one that seems to understand how much easier it is and doesn’t bother about the cost/policy!

Dietician is convinced I’m overfeeding baby, and if you do the maths then yes, I am feeding him a larger volume for his weight, however I feed on demand and follow his cues. I’ve tried feeding him the amount they advise and he ends up screaming and being unsettled after feeds and wants a top up an hour later, so it’s been a bit of a nightmare. As soon as I’ve gone back to the volume I was feeding before, he’s settled, content, sleeps well (through the whole night sometimes!) and it makes no difference to how much he is sick. Unfortunately, dietician has essentially told me that they will discharge me if I don’t follow their advice on feed volumes! So I feel I’m in a tricky spot…

I’m glad to hear that things have gotten better for you and it’s so reassuring. Things have improved massively for us already, I just have to battle the conflicting advice I’m getting and follow my instincts and what makes my baby happiest!

Thanks again for your advice x

We are having such a similar time!
I had so many arguments with doctors/dieticians regarding feeding, i stood my ground and told them i wouldn’t be reducing her feeds because like you, she screamed and was so unsettled!
I spoke to my HV who went against their advice and wrote up that i was to continue feeding on demand, i watch for her cues and also allow her what she wants (within reason).. she’s now 3.5 month and some meals she takes 100ml and others she finishes her 180ml! 180ml is what she is recommended to be having per feed at the minute anyway!
The dietician told me to give her maximum 90ml per feed to help her reflux, when i tried it made no difference at all to how much she brought back up…. The omeprazole made the difference, not her feeds! Maybe speak with your health visitor?
My health visitor was really on my side, especially with my girl having a small birth weight.

We have had a brilliant weight gain now, she was born at 5.1lbs and at 14 weeks she now weighs 13.4lbs so even though she’s small for her age she’s grown so so much!

I would speak to the GP again about the liquid medication, also ask for a referral to a peads doctor? Our peads doctor told us the correct dosage for our baby, she’s now on 5mg a day because i think upto 10kg a baby can have 5mg, our doctor wasn’t giving us more than 2mg.
Since we went 5mg the sickness has almost stopped, sometimes she brings loads up after a feed if i haven’t put enough thickener in but that’s my fault 😬

Im so glad you got some answers and things are improving for you! X