CMPA or reflux?

[elly1255]

I need advice I'm loosing my mind! ( I have this thread on behavioral thread but no luck getting any comments)

But if back story. My son is 5 weeks old on Monday he's had a crap start to life born at 36 weeks then in the nicu for a week. Since being home he was on SMA little angels , he was super unsettled screaming day in day out. I thought colic, the doctors though CMPA since I have had 2 other children with it , he then trialed nutramigen but completely refused to drink it after throwing up the full bottle. Then he went back to sma little angels till they prescribed him something else, then they gave him neocate for a week trial but ended up worse screaming and around 15-18 poos a day his bum was blistered crazy, then we was told to trial him on a comfort milk to rule out colic which we are now on hip organic comfort milk for just under 2 weeks. The belly ache seems to have calmed down now he's taking gripe water , he tried carobel that gave him horrible constipation and belly ache made him cry all day. Now I've ruled out colic the doctors are 100% sure he has reflux and so am I. His symptoms are

-cry's after a bottle
-very unsettled
-squirms and arches his back
-constantly being sick and swollowing it
-being sick after bottles
-legs up to his chest and flaring his arms everywhere
-going red in his face
-hiccups and chokes on milk a lot
-sneezing
-very congested and sounds mucusy.
-flakey skin
-spots and blotches on skin after bottles.

Things he's had
-nutramigen (didn't drink it)
-neocate (had a lot of diarrhea didn't trial long enough)
-Carobel ( bad constipation and bellyache)
-gaviscon ( bad constipation very unsettled)
-lanzaprozol ( didn't see a difference)
-omeprazole ( still on this but chokes really bad taking it)

I'm so fed up as in his 5 weeks of his life they've changed milk so much im petrified to change again. I do feel like they didn't leave him long enough on the neocate and I have been given a choice , re try the neocate and omeprazole for 4 weeks or try the aptimal anti reflux they have prescribed. I'm not sure what to put him on as I don't want to change him to CMPA milk for it not to agree with him and have to change to reflux milk after 4 weeks ? Please any advice is appreciated!

Bump

Could he have multiple food allergies? My baby is allergic to dairy, egg soya and coconut. I assume the little angels has dairy in it, we are on alfamino as it’s the only coconut free amino acid formula, he reacted to althera and neocate as they both have coconut in. We also use strawberry nesquik to sweeten the alfamino so he drinks it.

@NorthernDuck I'm really not sure but it's really upsetting me and causing my anxiety to go crazy, I have been given sma alfamino to try I'm just so scared to switch him again and him be
Worse on it and have to switch for the 7th time when he's only 5 weeks old :/ xx

Alfamino is the top one of the sms range and also free from anything else he could be allergic too, it tastes disgusting so you may need vanilla or nesquik but I’d swap and see but probably not change from that. You really need to be giving them all 2 weeks to see if they are working for him because his gut will be really inflamed.
we had tongue tie and silent reflux too and it took 4 months to sort it out. Make sure to take some time for you as well as it’s so draining and hard with a baby that is so ill and in a lot of pain. Mine is now 6 months and win free, just started weaning and doing really well, you will get there but unfortunately there is no quick fix. We also have omeprazole for the reflux have you got any of this? A lot of the symptoms sound refluxy.

Hi yes I have omeprazole the problem is for me is he chokes on literally anything ! He chokes on this milk, the medication, the gripe water and it's quiet bad when he actually does as he starts going red and his lips start to change colour from holding his breath and not being able to catch it quick enough then he starts coughing really bad x

Have you checked for tongue tie OP?

hello! Thankyou for your messages. It's day 5 and I've still had no sleep lol, endless doctors and hospital appointments , allergy confirmed for CMPA so pediatricians have started him on neocate and carobel and took his feeds to 3oz every 3 hours from 5oz. It's been 2 days on it and invisibly I won't see a change yet but I'm exhausted honestly 5 days no sleep and other children to look after and take to school is horrible 🥲 I try sleep when he does but the thing is he isn't sleeping so we both can't lol😂 gotta laugh or I'm cry.. again 🙃🥲 tongue tie in waiting for the NHs to get him in, I've spoke to a donation clinic in Liverpool too about a tongue tie as I cannot afford £400 for him not to have one and I've spent mong I don't have x

@elly1255 I’m going through a similar situation with my little girl. We’re currently trying nutramigen to see if that helps but she’s still really wheezy and arching her back so I think there’s a reflux issue there too. How did you get taken seriously so quickly? My health visitor has been trying to fob me off saying it can’t possibly be reflux but any time I try to put her down she just screams. She’s also really struggling with trapped wind and seems to be uncomfortable passing wind. I don’t have the GP again until Friday, I think I’m lucky if the two of us got 3 hours of sleep last night.

Hi hun, I got seen quick because I carried on alarming untill I was heard :) I also had video evidence of how he is daily , I'm still going through it , my son chokes excessively on everything and can't catch his breath it's petrifying I got 5 hours sleep last night , before yesterday it was 5 days since I slept! , I went to the hospital I don't deal with doctors they don't do maff all , I went to hospital and as fora pediatrician x

@elly1255 Sounds like you’re doing an amazing job! We’ve been on nutramigen a week now and I’ve seen a big difference in her but it’s deffo reflux. She’s got the same symptoms as another little girl in the baby class we started on Wednesday so I’ll just ask for omeprazole and see how I get on 🤞 I won’t be leaving until we have a prescription.

Unfortunately I had to come off omeprazole as he choked taking it , but takes the lansaprazol just fine x

That’s good to know there’s another option. Thanks @elly1255 !

My DS was similar but EBF. I cut of dairy it did nothing. He was having nappy explosions all day at least 10 until he was on solids. It was during the pandemic so the Gps were unhelpful the HV were unhelpful. I had a very unhappy baby until 5months (went on solids) no one cared. He would scream cry for hours. I tried all the techniques. Tilting the crib, tilting while feeding, keep upright for 30mins after feeds. Nothing qorked.
We did cranial osteopathy at 10weeks and things improved slightly. I wish I tried bioGia probiotic drops as others said that helped their silent reflux babies.
We did Gaviscon from Gp. Did nothing but make DS more angry and scream more. He had silent reflux and becuase he kept food down and was gaining weight no HCP cared. They only cared if he lost weight.

So in our own we decided to introduce solids. After 6 weeks the nappy explosions stopped and he was a very happy baby.

This seems exact same as my story, but unfortunately my boy is only 9 weeks I've got so long to go before solids I cry everyday as I jsut don't know what to do 😩

Just wanted to update on our situation as we seem to have cracked it now. She’s been on nutramigen for about 5 weeks now and has also been taking carobel mixed in to thicken the milk for her reflux. She’s not constipated anymore and has a normal poo every day, her painful trapped wind is also gone. She’s been slow to gain weight and at one point dropped two percentiles with all the issues but she seems to have levelled off in the 25th percentile now. We ended up changing health visitor as we just weren’t getting the support we needed from the first one.