CMPA/Silent Reflux experiences.

[Olivia199]

Hey lovely people.

I have a CMPA/Silent reflux question for you.
So my beautiful little girl who is now 4 weeks has required formula top ups since birth due to difficulties breast feeding. I have, however, been mostly able to pump enough to give her expressed milk for a majority of feeds until lately.
She had a tongue tie diagnosed and snipped on Thursday so I was told to stop pumping, breast feed as regularly as I can with formula top ups offered after. So the formula little one has been getting has increased but pumping and feeding wasn't working for us as she would be feeding every 5ish minutes to get my supply up and would be very cross if she came to find a freshly pumped booby.
Anyway. Since a few days old I've noticed silent reflux symptoms. Gagging and coughing whilst laying down, bringing knees up to belly and arching her back in pain, bubbling at the mouth while gagging etc. I saw the GP who prescribed gaviscon which didn't help and made her constipated so we have been switched to Omeprazole. She has been on the omeprazole with thickened milk using carobel (suggested by the health visitor due to choking on feeds) since the beginning of the week and since adding in more formula her symptoms have become worse. She now has very dry scaly type skin, she sneezes a lot, VERY gassy and lots and lots and lots of liquid poo nappies plus horrendous silent reflux symptoms. She hasn't been able to lay down flat at ALL without being in pain and almost immediately starting to gag and cough.
Overnight yesterday she took far less milk and has been refusing the boob and bottle and when she started having less wet nappies I took her to the out of hours GP.
He was lovely and checked her over and said he is almost certain it is a cows milk protein allergy and that he has seen it thousands of times and she needs the special milk. However he wanted us seen in hospital as she was dehydrated. So off we go and we see a horrible doctor who held a bottle in her mouth while she gagged and coughed and screamed until she had taken 30mls and declared it was just because she wasn't used to her new tongue movement following the tie cut. Little one then promptly threw up the 30mls (I would have too) and I did say that I doubt having her tongue tie cut on Thursday has anything to do with symptoms that she has had since soon after birth and that have been increasingly worse over the week following an increase in formula. She then said because LO wasn't pooing blood, it couldn't be CMPA and that I should carry on as we are but to exclude all dairy from my diet. Which I would understand if I was actually able to get any booby milk in her at the moment. Unfortunately my supply has dropped with all the difficulties and I'm struggling to get it back up with pumping as LO is only comfortable when upright on me so Velcro baby is sort of the priority. So we are talking 10-15% booby and the rest formula. So not sure what an elimination diet can do for her...
I'm obviously going to go and get her seen again by someone else because she is in so much pain and I want to make sure I'm not making it worse.
So I do have questions, it isn't just a moan... (much)
Anyone who has had a littlen on Omeprazole, how long until you saw improvements?
Anyone diagnosed with CMPA, did little one suffer with blood in poo?
At a total loss of how to help her. The doctor who was so convinced of a CMPA has me worrying that I'm basically forcing her to have something she is allergic or intolerant to by giving her the formula!
She is taking a few sips every 15-30 minutes but is definitely struggling. I've started on my freezer stash of booby milk which will hopefully keep symptoms mild after we had a pretty terrible night of her in pain!

Thank you!

The treatment you received at the Hospital sounds horrific. I've got CMPA and I can honestly say that I've never had blood in my poo.

Allergy U.K. have some useful information on the symptoms of CMPA. They also have a helpline if you want to give them a call tomorrow and talk through her symptoms.

Giving up dairy will only be useful if she does have CMPA and if you are going to continue with BFing?

If she's finding it frustrating to feed from a freshly pumped breast, could you pump after a feed or from the other side whilst you feed her?

Definitely sounds like CMPA. JOIN THE Facebook groups "Main group - CMPA support" and also "Breastfeeding- CMPA support"

Many, many people with similar experiences. It took us over 5 months to get taken seriously and diagnosed. It was awful.

Go back to the GP/hospital and keep going back until you get an amino acid formula prescribed like Neocate. Good luck OP.

Thank you both so so much for your input and replies. I called the GP on Monday who saw her and straight away prescribed Pepti 1. She said if we see no improvement then she will start an amino acid based one.
She was also pretty disgusted with the treatment at the hospital and I've put a complaint in with her support. For any mother to be referred to hospital by worried doctors is a scary time. So to be treated like that really was disgusting. Especially on the paeds ward where you'd think they'd have more compassion!
So we are now a few days onto the new milk and her skin is miles better, the rash that had started has gone and she's now not flaky/scaly!
She also isn't in agony after each feed now and is SO much less gassy. No tummy gurgling..!
She still isn't quite right but happy that she's not in pain like before. She's still feeding tiny bits but very often but getting it into her which is something.
Her reflux is 10 times worse mind you - I'm thickening it with carobel but even then I've noticed the difference. She now gurgles and gags and coughs/grunts all night being laid down. Despite pace feeding sat up, sitting up for 30 minutes after, little and often and Omeprazole!
She's also a bit more sicky. But I am hoping these all settle with the Omeprazole and treating this suspected CMPA!
I think as we have seen improvement, we will stick this out for the two week trial and hope that symptoms continue to improve as time goes on!
Thank you again, it's awful that so many people have had such a fight for this.
I feel incredibly lucky that my awful experience was a one off!

I glad that your GP has helped you to complain. I don't often complain but I would have done in this situation, just to hopefully stop it happening to another parent.

Hi I was just wondering how you got on with your baby as this sounds exactly the same as my baby?

Hey! Sorry to hear you're having such a struggle with little one. It's totally awful watching them go through it.
It was quite the whirlwind but she's amazingly settled now.
After two weeks on the Pepti 1 her symptoms had improved but starting getting worse again. We were referred to the dietician and started on Alfamino which is an amino acid based formula. We dropped the carobel as many CMPA babies can react to it.
I had a different baby from then on!! After a month to 6 weeks of being on the Alfamino, we dropped the Omeprazole and she was totally settled. Drinking full bottles and just so much happier.
We then saw the dietician who asked us to do a milk trial with normal formula to check the CMPA diagnosis which we did and bless her, it was awful. Rash all over, mucousy stools, horrendous silent reflux and a whole host of other rubbish symptoms. Back onto Alfamino and weaned dairy free and she's absolutely perfect!
We had an accidental milk exposure while weaning and she had the same symptoms again but they cleared up quickly. Due to start the milk ladder once she's turned 1.
The second and third and all the other doctors and dieticians we saw reiterated that no, bloody stool is not something they HAVE to have to be diagnosed CMPA and that the first awful hospital doctor was not only incorrect but a total cow.
With these things, sadly all they can do is try the special formula. If it helps then you know that's the deal. If it doesn't then you go back to the drawing board.