Silent Reflux/Possible CMPA nothing working

[Lentil24]

Apologies for incoming essay!

My DS was born at 33 weeks and is now 6 weeks adjusted/ coming up on 3 months old. He is exclusively formula fed and needs higher calorie milk due to low birthweight. Since a few days after he came home from the NICU after a 3 week stay we've had a barrage of symptoms which have developed:

Silent reflux
Screaming and contorting due to acid coming back up - sometimes even when being held fully upright
Constant congestion but nothing visible in nose/nothing comes out when suctioning
Occasional wheezing
Coughing and spluttering during and after feeds
Squirming around while feeding
Gagging randomly all the time
Straining sometimes for hours before passing normal consistency stools
Absolutely vile sour or sometimes rotten egg smelling dirty nappies

So far under the guidance of the consultant and dietician we have trialled:

Gaviscon - utter failure and caused horrendous constipation
Omeprazole - dosage being upped and upped but is doing very little to stop the acid burning him when milk comes up and he reswallows up to two and a half hours after last feed
Carobel - caused diarrhoea and also made his spit up like glue which caused him to choke

We have also done all of the standard reflux advice - upright paced feeding/raise head of cot/hold upright for hour after feeding/baby wearing etc etc to absolutely no avail whatsoever.

We are currently in the midst of a trial of a hydrolysed formula - Pepti Junior in case CMPA is the cause of all his issues. His silent reflux seems to be even worse than usual because the milk is thinner and he's spitting up more however Carobel is a no go. About two hours after a bottle he will inevitably start screaming as the acid rises to the back of his throat and it is terrifying to watch him twist and throw his head back with pure panic in his eyes. The omeprazole just isn't even touching it despite us rapidly approaching the top end of the dosage scale.

We thought we had maybe initially witnessed a very small improvement to his general discomfort level and congestion but I'm beginning to think this was a coincidence as this has not persisted. The dietician insists we continue for at least another week before reviewing but I just don't see there being any improvement now if there hasn't been any up to this point - by all accounts most people describe having a "new baby" after a few days if the milk is right.

I literally do not know what to do anymore. I don't know how I'll survive months and months more of this if no real cause is found because nothing I do/medication seems to make any difference whatsoever. I'm already really struggling after having such an extended newborn phase due to him being premature. I dread every feed especially at night and clock watch waiting for the two hour mark after his bottle when all hell inevitably breaks loose.

We don't have another appointment with the paediatrician for a month and the GP hasn't helped much beyond recalculating his omeprazole dose on an almost weekly basis when I've been calling to say it's still not having any effect. They don't really want to do too much because we are under the hospital but at the same time the hospital don't have any sooner appointments for him either.

Does anyone who has been through similar have any wisdom or anything to try that I may have missed? I'm at my wit's end

6 weeks adjusted is pe4fect timing for Colic....

My boys were both at 34 weeks. I remember 6 weeks adjusted as being the absolute pit of hell. Gassy fussy vomiting babies that just wouldn't sleep without being held upright and rocked. Hideous time.

Keep trying things, but also bear in mind that are very likely to grow out of it. Their digestive systems will nature, their muscles will get stronger. In the meantime make sure you are getting a break. My dad used to take my boys out in the pram - I'd feed them and he'd take them and walk for two hours (or longer if they were peacefully snoozing). That made such a difference to me.

Reflux can take a long time to get better. My youngest is nearly a year and still spits up a bit now and then. But it didn't seem to cause her pain after 4 months and we had her off the omeprazole by 6 months. I did worry a bit about her development - I didn't do tummy time with her as she'd just vomit and lie in a pool of sick! She was a bit late to crawl (10 months) but is otherwise fine, so please don't feel bad if there are things you feel you "should" do but can't.

Has anyone suggested switching to neocate formula?

My daughter has severe silent reflux. Omperazole only helps her at the top 3mg/kg dose. She also needed as much gaviscon as we could get into her. She was on 9-12 sachets a day for a while. Yes it caused constipation and we had to use lactulose as a stool softener for a while. We tried carobel but my daughter is allergic to carob which it's made from. She has 20 food allergies including cows milk. We got into a better place by me removing her allergens from my diet, omperazole and gaviscon but she still really struggled at 8 months we added domperidone and that was a game changer. We didn't get to symptom free for her allergies until after weaning went to formula. She's allergic to coconut with ruled out most formulas so we ended up on alfamino which was thin and needed thickening. She's 4 and still has reflux and on the medication although has needed the lactulose since she was a baby. This isn't typical btw most outgrow reflux between 6m and 2y and cmpa between 1 and 5.
My sister had projectile reflux back in the 80s it didn't stop until she turned 2. At 10 weeks she was less than 1lb over birth weight. She continued to be randomly sick until she went vegan a few years ago so we suspect she had a dairy allergy too.

@TinyTeachr I had considered colic because of his age but he doesn't have prolonged blocks of crying it's just every couple of hours throughout the day with the reflux but it might explain some of his general grumpiness and fussing and you've hit the nail on the head this is a hideous time and I feel so bad for feeling that way but that is the truth of it! I'd genuinely be so thrilled to have painless spit up at this point regardless of how much laundry it causes. I've also been feeling bad for him not being able to have a kick about on his play gym or tolerate tummy time so thanks for the insight on that as well and I'm glad you're coming out the other end of it I'm just not sure how I'll manage long enough to see it myself!

@Brunelofbrio I think the dietician said that we may trial Neocate or similar after this formula but I'm not really convinced that it will be the solution since we haven't seen even a moderate improvement with the hydrolysed formula - unless I'm wrong and it doesn't work that way?

@Superscientist Sorry to hear you've had a similarly nightmarish time of it and I take my hat off to you working with so many allergies. I think we are close to 3mg/kilo ourselves on the omeprazole but I'm doubtful at this point that an extra 0.5ish mg will make a difference when the first 2.5 haven't put a dent in it but would very gladly be proven wrong! We also had a gaviscon and lactulose cycle going for a couple of weeks but we had been told absolutely no more than 6 sachets a day due to his size which actually meant he had to go at least one feed a day without any at all unless we split a sachet in half. I definitely could have accepted having to use the lactulose longer term if the gaviscon was making a difference for him but I couldn't see any change for the better at all while he was having it even on top of omeprazole.

I've never heard of Domperidone I'll have a look into it before our next peads appointment in case it's something that might be worth discussing for us.

It was after she reached 20mg of omperazole so she would have been 5 months at around 7kg that we were up at that dose of gaviscon.
There are other thickners. I've not tried them but I've heard of magic mix and think'n'easy.
We went from 1.4mg/kg to 3 when she was 4months so i don't know how she was when going up in doses but we can tell when her omperazole drops to 2.5mg/kg and usually have to get her domperidone increased. She is now kept on the highest dose of omperazole for her age otherwise she's back to being a newborn (awake every 40 minutes and only sleeping if held upright) so we have to wait for her birthday for the omperazole dose to change. Domperidone speeds to the emptying of the stomach. It's no longer licenced for under 12s so it can only be prescribed by a paediatrician after other medication have been tried. It makes a big difference to us.

I wouldn't discount the amino acid formulas because the hydrolysed haven't helped. With cmpa even a tiny amount of dairy can cause reaction. When we did the milk ladder for the first time at 18 months my daughter had a single piece of biscuit the size of a grain of rice and she screamed for 2 days. I tried to reintroduce tomato when breastfeeding and I had a barely visible smear of ketchup on my bacon sandwich and that was 3 days of loose nappies and screaming!

If she's got the IgE mediated type of CMPA you might see more of a difference on the amino acid formula.

If you get a poo nappy and press it together then pull it apart is the poo stringy?

We saw hardly any improvement on hydrolysed formula. Neonate was much better for us. Gaviscon did nothing. I would push dietician to let you try neonate as soon as possible.

I'm so sorry. This is so hard to cope with.

Same here. Hydrolysed formula still provoked an allergic response in my DS. Try the neocate.

@Bubbles332 He does have stringiness in his dirty nappies if I unfold them - not a lot but it's definitely there

I have a telephone appointment with the dietician on Thursday so will definitely ask to trial an amino acid formula then - I didn't realise that no improvement on hydrolysed didn't mean that amino acid wouldn't succeed as I thought that there would be at least a little bit of improvement if he was receiving "less" allergen if you get me? So we can't rule out CMPA yet then

It can take a few weeks for the dairy to clear from his system if it is CMPA so there is still time to see an improvement on the Pepti. My dietician said she likes to keep them on the Pepti if they tolerate it ok because it's possible that the tiny exposure to whey can help them to grow out of the allergy in the future. However, we did have to switch to Sma Alfamino in the end. We ultimately decided to start weaning at 5 months and it's now that we've seen a real improvement in the size and consistency of his poos- sometimes just formula in general can constipate them.

I feel for you- everyone was desperate to tell us it wasn't CMPA because CMPA is really rare for a long time. It took me accidentally eating a shortbread biscuit and his entire face coming out in hives when I BFed him (we combi feed) at 8 weeks for anybody to take it seriously.

Just by way of update in case anyone reads this in future in similar circumstances! Had a call with the dietician today and based on lack of any improvement and indeed worsening of some symptoms we have been prescribed Nutramigen Puramino to try. Going to start mixing this in from tomorrow and work up to full bottles.

His rashyness on belly and legs has gotten worse and looks almost like the beginnings of eczema and his dirty nappies have become a nightmare - he is straining a disproportionate amount, leaving skid marks on several nappies before managing a very loose poo later in the day. He also has a very sore looking bum - he doesn't have nappy rash but a red ring around which we are putting cream on to try and help and letting him have some nappy free time to air things out a bit.

We also had a fairly scary episode yesterday where he experienced a suspected laryngospasm in response to a severe silent reflux episode. He went bright red and started foaming at the mouth unable to catch a breath. It lasted about 20 seconds but it might as well have been 20 minutes and the sheer panic on his little face broke my heart but he doesn't seem to be any the worse for wear. Suspect that his omeprazole dose needs to be increased as well as his discomfort levels and painful acid episodes have been increasing over the last few days - I feel like we are just constantly chasing our tails with this. Hopefully we will see some improvement over the next week or two if this milk is our winner, or failing that we have an appointment with the paediatrician at the preemie clinic in just under a fortnight.

Just a warning I believe puramino has soya in and half of babies are allergic to dairy and soya. If this doesn't help ask for neocate or alfamino. They are 2 other amino acid formulas

It might be worth seeing if you can get him weighed and get the omperazole weight adjusted /increased slightly. If it hasn't been that long since the last weight adjustment you might need a higher dose. We were having to have the weight adjusted every few weeks because the GP was keeping her on the middle dose which was really enough and meant even small weight increases caused the reflux to return. Once she was in a higher dose it was more like 1kg weight gains that caused the symptoms to return.

Good luck with the puramino!

I didn't realise that soya could potentially also be an issue so thanks for highlighting that! This is all such a minefield! We are now at 24 hours solely on Puramino and it's so far so good he's drinking it down quite enthusiastically and although it's probably a coincidence at this very early stage but he's been fussing less during feeds today with much less pulling off the bottle and shouting while latched on. We wait with bated breath to see how things progress.

I got him weighed yesterday by the HV and he has packed on nearly 2lb in the last 3 weeks and his omeprazole was I think actually based on the weigh in the week before even that so it was no wonder the effectiveness was waning. I managed to get a quick telephone appointment with the GP to get the dose recalculated and we got that into him this morning so we should be cooking with gas now for a couple of weeks at least. We are fortunate that he is being weighed so often anyway due to being early and small for dates which makes it easy to keep on top of the dosage.

This was my exact experience. My advice would be to go straight back to the GP - hydrolysed isn't necessarily what you need. Mine was on nutramigen AA from 5 months after I weaned him off the breast. It was hell as I had to cut out dairy, soya, gluten - basically anything I ate that was remotely inflammatory affected him. Once he was stable on the prescription formula all was well. They always try and start you on the not totally hypo allergenic formulas bc they are cheaper. Don't fall for it. Insist on the totally non hypoallergenic formula and get them on it asap. This is really really important because it is extremely stressful for you and harmful for them to have so much acid in their gut. We did PPI and gaviscon but to be honest neither are good bc they don't address the issue- and there are many reasons why omeprazole is very damaging to the gut when you need to have a certain level of acidity to be healthy - for immune and mental health and health generally.

When we weaned into solids it became very obvious what the issues were - gluten and dairy but over time that was a cumulative issue and not a iGe thing. So he can have both now but would never for example eat hard cheese or yoghurt. It comes out in his skin and gut and will end up with diarrhoea if too much. So he knows how to manage it himself and will often say, oh no I won't have that.

Be really forceful with yoyr GP.

Hi lentil, I know this was a while back but what was the outcome of the formulas? I hope it all worked out for you. I'm in the same boat although this is my second cmpa / reflux baby but I feel almost as helpless as I did with the first, as baby 2 is not responding to pepti and Lansoprazole the way my eldest did.

Hi LateHouse! In the end the Puramino thickened with Carobel was our winner. The Omeprazole was binned in favour of Lansoprazole - he wasn't tolerating the nasty tasting liquid omeprazole so we are using the dissolvable Lansoprazole tablets and have been for a few months now. I also found early on we were constantly having to have the dose of the medication reviewed because as soon as he'd put on a lb or 2 it became less effective. We did trial a reintroduction of normal formula after a month or so and it was a disaster so that was that.

How long has your wee one been on the Pepti? If it's been a few weeks and no improvement it might be worth asking for a trial of one of the Amino Acid formulas to see if it makes any difference. It took about a fortnight for us to see a marked improvement after starting the Puramino but then suddenly I realised he wasn't straining anymore, wasn't arching his back hours after feeding and so on.

I really hope that things improve quickly for you and your baby it is so so hard going in that trial and error stage and I imagine it being your second rodeo doesn't make it any easier especially when what worked last time isn't this time.

So glad to hear things improved for you!

We've just been prescribed alfamino which is the other AA formula. We've only given a few bottles so far but he has sicked up the majority of both even with gavisgon in to thicken it. I tried carobel with my first baby but it didn't agree with her so I'm reluctant to try with this baby. I might take a look into magic mix which is similar, I'm worried about the constipation effects of gavisgon.

Although you're on a different AA formula, did you find it grainy? We're using Dr Brown size 2 teats (we were originally using 1s) but find they still get clogged with the grains.

We're also on lansoprazole! I've been booking in fortnightly weighings with the HV team to make sure we're on top of the dosage. It's so hard to dose the tablet correctly when their weight changes so often isn't it.

Its so hard having a cmpa/reflux baby, no one will understand unless they have one!

Ahh that's brutal - see whoever designed these milks to be as thin as water when the majority of CMPA babies have reflux as well, I hope they stand on an upturned plug.

It definitely might be worth a shot getting a hold of a different thickener. I know a lot of people rave about the magic mix as an alternative to Carobel but it seems it can be quite hard to get a hold of. I never found Gaviscon to be particularly helpful in keeping the milk down but again it's just pure trial and error - and omg the constipation was unreal. I initially thought the Carobel was causing problems but when I stopped using it he started bringing up clear liquid hours after feeds I got desperate and tried it again because it was all I had to hand and we've been fine since.

When we were using smaller teats I definitely sometimes found the milk to be a bit grainy and blocking the teat especially with the thickener in - although it might be the thickener making it like that I'm not sure. We were getting blockages up to Mam size 2 teats but once we moved onto 3's and now X's we haven't had a problem.

We are going to start tapering the Lansoprazole once he gets a better hang of weaning. The paediatrician told us to basically wean him off it by not increasing the dose with his weight and I am hoping we don't have any major issues.

I felt like I had been hit by a bus in the beginning, I had barely gotten my head around having a tiny premature baby at home and then all hell broke loose!

@LateHouse alfamino is awfully grainy.
For cleaning bottles I would start with a rinse with a good squirt of washing up liquid and boiling water and give it a good shake got rid of most of the grime then washed and sterilised them as normal
My daughter was older when we started on formula so we didn't have issues with it blocking the teat... Plus she tended to chew the teat and make the whole bigger anyway