severe reflux 5m old - at the end of my tether pls help

[AmberM2022]

My LO has had bad reflux since birth. The sick is CONSTANT - and i mean constant it’s all day long, he feeds at 6am and at 10am he is still throwing up from that bottle and he’s about to have his next one. We were told to wean him early which we have it’s made no difference. He’s been on baby gaviscon, lanzaprozol, omeprozol (sorry they may not be spelt correctly) and nothing helped. He has CMPA so under a paediatrician but they are now seem to be saying well his bowels are under control so we might have to deal with the sick - which is very easy to say if you are not dealing with it. It’s huge amounts!!

Has anyone ever had this with their little ones and had ANYTHING to help??? I’m absolutely so fed up now.
Also to note it doesn’t always seem to bother my little boy, only now and again.

Have you had him assessed by a qualified tongue tie practitioner for an oral tie? I don't mean a GP, MW or HV, I mean someone who has specific training and qualifications in assessing oral function?

Yeah my now one year old had reflux, it was like a constant waterfall out of his mouth. He has cmpa too so it was even worse on the thinner neocate formula. We tried omeprazole, gaviscon, carobel and every bottle and teat we could buy. Only thing that worked was time. When he was able to sit up unaided around 6-7 months and his core muscles strengthened, that’s when we started to see an improvement. His reflux went completely by 8 months and surprisingly I have almost forgotten what it was like to be constantly covered in sick.

Has your LO had an abdominal xray to assess their bowels? Or a barium swallow? What solids are they eating?

Is he breastfed? We also had this. It was other allergies (in addition to the dairy and soya) that became apparent during weaning. Once we got the right things out of both of our diets the reflux disappeared completely

My twins were like this. I used to call them my happy-chuckers they weren't bothered by it at all, but it was constant sick. Muslins everywhere. They were breastfed, so I just kept feeding them and they grew despite throwing most of it up.

I didn't try anything to fix it, because they didn't seem bothered by it.

The sick stopped as soon as they started eating some solids. I carried on breastfeeding for years after starting solids at 6 months, so it wasn't my milk causing the problem; they just needed something solid going in.

Hang in there. This too shall pass. As long as they're happy and growing, try not to stress too much - more of a laundry problem than a medical one?!

Carobel is the only thing that worked for DS, he went from being sick every feed to not once with the carobel.

Are you formula or breastfeeding ?

We also had this and it turned out to be multiple allergies. Took a while to find out what she was all allergic to, but when we did the sickness stopped completely and she could stop the reflux meds.

My DC wasn’t sick as much but was very uncomfortable and struggles to feed at all. Domperidone was the only think that helped. They don’t like to prescribe it and they have to do an ECG first and every 12 months while it’s being used. It speeds up digestion.

Agree with a PP, I'd get checked for tongue tie.
I couldn't see if he is formula or BF. If BF, I'd consider other allergies. If formula, the cmpa formulas are so thin, is this causing the reflux? If so, could you add a thickner?

Aptamil anti reflux formula worked for DS - total game changer. It’s thicker than a regular formula but can be made up in the same way with perfect prep machine etc - just need to shake well.

Yes he had tongue tie he had it cut at 3weeks. The amount of sick is just awful and at the moment he’s completely refusing bottles gone from 36oz in 24 hours to about 12!! but still having wet nappies. But the amount of sick is still the same, he’s eating solids but i don’t give him much to be honest because of the amount of sick. Because of his CMPA we can’t change his milk, and he is under paediatrician but i spoke to them and they don’t seem very interested and just said we can discuss at next apt (in 4 months) Hopefully he will grow out of it soon!

What milk is he on? If he isn't on Neocate yet ask to try that. Many babies with CMPA are also allergic to soya so you could try avoiding that too. Doctors were also very dismissive about the amount of sickness with mine, but as I was breastfeeding I just did an elimination diet myself to work out all of her allergies. Her paediatrician also prescribed Neocate to mix with food as she was very underweight due to the constant sickness. Has he lost weight with drinking less?

I really feel for you. My DS was like that and it was horrendous. We tried all the meds too. No use at all. The worst time was when they recommended a special formula (can’t remember which) and it made him do the most awful stinky sticky poos imaginable.
I’m afraid it did go on for quite a while. It gradually improved and then stopped. He was developing fine and managing to grow reasonably well despite apparently keeping very little down, so none of the doctors (including consultant paediatrician) were worried. But it’s awful to see your baby in this state.
I just got very expert at catching and cleaning vast amounts of sick. It will be over one day, and you’ll have a more normal life!

Have you had his oral function reassessed post-cut? The membrane grows back and can regrow with a further restriction.

As an adult with severe reflux he mightn't or he might. I would wean him, a lot of mine is allergy driven. Also avoid things like ready made baby jars with lots of tomatoes in they are often a trigger. If you have a look at adult reflux diets it might help with weaning.....milk is one of my big triggers but not cheese 🤔

I had this with my first born. I was constantly changing her clothes, my clothes, crib/pram/cot bedding and scrubbing down couches and carpets, wiping down tables and tvs -she would projectile vomit with amazing force. It was bloody scary and the worst thing was-I think because somehow she was thriving-her doctor and health visitor didn’t believe how bad it was. Had me down as a neurotic first time mum who couldn’t handle a bit of possetting. Anyhoo cut a long story short medics did take it seriously eventually and I gave up breast feeding and put her on soya milk which didn’t help. Carobel helped in that the sick was thicker so didn’t ‘travel’ quite so far but really it was just a case of waiting it out……10 long months in her case. Sorry OP. 😬

My son was severely colicky and had gastric reflux and was on Zantac for a very long time and we ending up settling on a soy based formula -his reflux and aspiration spells led to pneumonia so was very serious. Good luck-we only got the dosing right at 8 months and he was fine

@LaughingLemur He is on Neocate LCP, it helped his bowels loads, but absolutely not the reflux :(

@user40816No i haven’t actually had it checked again since cut, i should look into that Thank you!

No problem. I really hope you can get it sorted, 10 months down the line and I know how it feels to still be plagued with infant reflux... except my DD is now too old to have her TT cut again without (privately funded) full on surgery so we're stuck.

I’d agree with this too. Also, you should be given daily mouth & body exercises as simply cutting the tie usually doesn’t restore oral function. The tongue muscles have to be re-taught.

My daughter’s reflux got much worse with weaning and purées were the cause which is apparently common for reflux babies, so be careful when you start that.