Reflux cmpa HELP!!

[Pep12]

So lo was diagnosed with cmpa and reflux at 9 weeks and is now 13 weeks. Was put on omeprozole and pepti 1 formula. Still bad so changed to nutramigen which made things even worse. Now on neocate. Shes not feeding, only taking 2 or 3 oz per feed screaming and pulling away. After any milk she screams in pain then does lots of trumps. Tries carobel, different bottles and teats. We feed upright and keep her upright after. Shes screaming all day, barely feeding and im at the end of my tether. Any ideas on what else I could try? Or if it could be something else rather than reflux or cmpa? X

Started the pepti at 6 weeks before it was confirmed as a trial x

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@Pep12 my DD was diagnosed at 4 weeks with cmpa, colic and reflux.. we had 4 whole weeks of screaming for upto 6/7 hours on end, not sleeping, screaming when feeding and she was prescribed aptamil pepti 1 and infant gaviscon and this seems to have only just kicked in and started working and she's now 9 weeks on Monday.. we also changed her bottles to tommee Tippee anti colic and they're absolutely fab!! Xx

Has she had a referral for a swallow study? Have they discussed pyloric stenosis? It is very rare, but it sounds that if the symptoms are persisting regardless of the formula changes that maybe there's something physical as play too. This must be so upsetting for you both to be going through. I know a lot of people recommend giving reflux babies a pre or probiotic as well as sometimes their gut bacteria are a bit out of whack, and omeprazole reduces their gut bacteria too.

@SunSparkle it's so hard with the screaming on end for 6/7 hours because you feel completely useless not being able to do anything for them! My dispensary recently changed her milk from aptamil pepti 1 to SMA lactose free as they'd ran out of pepti 1 and it's completely thrown her as she has cmpa not a lactose intolerance! She's been on the SMA LF for 2/3 days now and has begun to get grisly and unsettled during the evening again 😩 she has her 8 week check and injections in the morning so I'm going to mention it again.. just started to get my happy smiley baby who sleeps from 10/11pm till 7am and the milk change is making her unsettled again🤦🏼‍♀️
Surely the dispensary should know the difference between CMPA and Lactose Free? One is protein and the other is sugar 🤦🏼‍♀️

@ChlOeWh that's awful! They aren't interchangeable at all. I hope they can get you the Pepti formula soon. Poor poppet.

@ChlOeWh I meant it's awful of the pharmacy - you've done nothing wrong! Just read it back and didn't want you to misread.

@SunSparkle Don't worry, it came across absolutely fine ☺️ yeah I'm hoping they'll sort it tomorrow! She needs more milk anyway as she's got 1 small tin of the SMA left and 1/4 of one now so I'm hoping they'll give me some tomorrow and I won't need the un opened tin! Don't get me wrong I'm so great full for the prescription milk and I know it's very expensive otherwise but she definitely needs the pepti 1 😩

@Pep12 I had similar with both kids.
Both cmpa and silent reflux and constant screaming, so you have all my sympathy and then some.
Has she been checked for a tongue tie? Both mine were tongue tied ( posterior ties and missed repeatedly until seen by someone who knew what they were talking about ) and that meant that they swallowed a lot of air with the milk as they couldn’t latch properly, breast or bottle.
Just an idea, hope it helps

My son had severe vomiting reflux. I’m afraid it took 6 weeks of Neocate before it stopped. His digestive system had just been ruined before hand.

Is she sleeping ok, or is she getting overtired which can make them cry at everything? Do you have a sling you can use to try settling her in in an upright position for naps?

Both my DD's had CMPA and were prescribed anti reflux medication. For us the only thing that worked was Neocate but they both had omeprazole. Is your baby still on omeprazole as that's the reflux medication.
Everything you've described with bottles, tears, carobel etc is exactly what I went through it really is very difficult especially when you have a baby that just screams all day.
It can take a few weeks for Neocate to work and for everything else to get out of your baby's system. Also the taste of Neocate is supposed to be awful and we had a particularly tough time getting DD1 to drink it so even when she was better she still was reluctant to drink much.
I hope things are now improving for you so that you can enjoy your baby. I know how tough it is and wouldn't wish it on anyone

We went to see a tongue tie specialist who said she has a slight posterior one but wouldn't effect feeding. We then went to see a private pead who has put her on the highest dose of omeprozole and said he wasn't convinced it was cmpa. She was still refusing bottles etc so I put her back on comfort milk which shes now been on a week and shes drinking every bottle, no reaction and a lot happier. She has the odd bad day or few hours but she's much better than she was. Been told to wean at 17 weeks too so hopefully finally getting somewhere 🤞🏻 if I had listened to my GP who said it was colic and babies cry and he didn't think it was reflux then we'd still be getting nowhere now 🤦🏼‍♀️xx

My neice went through this, it was awful, Infant Gaviscon was the only thing that helped, we tried absolutely everything else, all the bottles under the sun, milks etc.

Hope you both get some relief soon

keep going to consultants. Neil Shah at GOSH prescribed antihistamines for our reflux babies it was the only thing that worked and we did the whole ranitidine omeprazole journey. I'd urge you to try him.

Tongue tie of course important too