Any dieticians/paediatricians/someone with lots of experience out there! (Long post, sorry!)

[MamaToAron]

I have a gorgeous DS who is 4 mo. For what seems like eternity now we’ve had feeding issues. (Posted on here a few times already…)

He couldn’t latch so we started bottle feeding (I’m expressing so he only gets breast milk at the moment). He used to take absolutely forever to feed (an hour, an hour and a half per feed) and he started screaming at the bottle and refusing feeds/screaming during feeds.

I asked the gp to check TT and she refused, stating that it wouldn’t impact feeding and speech. Took him private, and 10 seconds and £200 later his severe (!) TT was snipped…

We changed bottles, to no avail.

We started using Carobel (he is also quite a sicky baby) which worked magic! I was over the moon, feeding times reduced to 10-15 minutes, no spit ups, happy baby..for a few weeks, then things started to gradually worsen again. Eventually we were back to square one, constant screaming, some feeds being refused…we then tried Gaviscon which did virtually nothing. So we decided to not give him medication in case it gives him tummy ache - he started eating much nicer again, but now he is constantly sick!

I feel like we are in a vicious circle and I just can’t find the solution. I’m often in tears I’m finding it harder and harder to cope with feeding times. I suspect CMPA but again, GPs dismissed me as he has no rashes, and no problems with his bowel movements. (Every GP I speak to advises something different so I find if hard to understand what might be wrong)

Anyone has experienced anything similar, or know what this might be? Would it be worth for me to try hypoallergenic formula and see if that helps? I am now tempted to go back to carobel but I don’t want him becoming upset again, it’s heartbreaking 🥺

I just really need to figure this out, I feel so stuck…

I was suspecting CMPA too

Can you try cutting dairy and soya from your diet?

Sounds like reflux or allergy
Tongue tied may have reattached?
Don't switch to formula if on breastmilk as not likely to help and if it's allergy can makd worse
Ask gp to refer for infant feeding assessment with a specialist Speech and Language Therapist

I am considering but I was told it can take 6 weeks? Also I am thinking of moving over to formula anyways as I find it difficult to keep up with little one’s demand if I want to spend quality time with him as well…exclusively expressing is sooo time consuming! 😂

So I might just get milk free formula and give that a go…

@littleducks sorry I posted my previous reply before I saw your message!

Ohh so if it’s milk intolerance would hypoallergenic formula not help? I will call the GP tomorrow, I just haven’t find them really helpful so far so wanted to check if there’s anyone who can give me some answers. I’ll try to get a referral out of them - they seem to be quite reluctant though 😥

TT hasn’t reattached x

You shouldn't move to a specialist formula without medical support really (Eg. a dietician or Dr prescribed). You probably would placed on 3-6 week waiting list for feeding assessment but babies usually priority

Milk free formula is £45 a tin if you don't have an nhs prescription. It's also disgusting so your baby is unlikely to drink it.

Generally GP won't prescribe it without paeds request either.

It can take 6 weeks for all traces of dairy to leave yours system. But you should see a big improvement within days. We certainly did.

I suppose you could try a few bottles of formula to see if helped or made problem worse if you kept pumping too (you don't want your supply to decrease and have nothing else suitable to offer if formula makes it worse have seen this happen).

@littleducks I would definitely speak to a GP before trying, I was just wondering if what I described could be milk intolerance so I wouldn’t go in there clueless in case they want to turn me away again.

I'm not sure what is happening with this thread seems lots of crossed messages.

I'd call gp again, reiterate ongoing problem you want to introduce formula but need support as possible allergy. Keep pushing for referral, ask HV too

You could also call your local SLT service and find out if they accept self referral

@TakeMeToYourLiar thank you for the insight! Did you find it difficult to completely cut everything out? The obvious things I imagine are easy, it’s more the products which ‘may contain milk’ I’m worried about. Is it easy to find replacement products?

@littleducks thank you, will definitely speak to the doctors as well to see if they could refer us! X

The Carobel trial is significant so try to get that info included in referral. It is used for reflux but also for babies with swallowing coordination. problems

Sounds like reflux to me.

Has the GP had a feel for pyloric stenosis? It’s more common in boys.

Does position help the sickiness? If you hold him upright does it help? Does he get upset when you lay him down?

My experience of this was due to reflux. It magically improved when the baby starting taking purees, doctor recommended me to wean onto mixture of purees and milk at 17 weeks. (This was 19 years ago)Screaming stopped but she continued to posset a lot. Sucking for comfort a lot too, I think the reflux caused sore aesophagus from regurgitated stomach acid, which makes them less keen to take another feed. But sucking without food was a comfort ...dummy, or breast in my case. She went on to be a thumb/comforter sucker.
Used to be very overtired too, needed a lot of sleep.

Mine was mixture of formula and breast milk as she was low weight and a twin, I wonder whether immaturity of her system (valve between stomach and aesophagus??) was part of problem.
Cranial osteopath also helped. Caesarian birth. She was very tensed up.
It was not a milk or dairy allergy. She has continued to eat everything without allergies although as a toddler she was fussy eater, very particular about texture. I think reflux gives long lasting caution to children re food equalling discomfort.

We were also advised to keep her upright (sling? Shoulder) for 45 mins after feeds

@littleducks I just checked, can self refer so will fill in the form tonight!

@Reallyreallyborednow this is the thing..he is perfectly happy and content between feeds, position doesn’t make any difference and he has absolutely no problem staying on his back…it’s literally just feedings, but at one point it was so bad he started screaming once we put him in his feeding position and he saw the bottle 🤷‍♀️

The purees were cereal based, baby rice etc , carbs, not acidic fruit purees to start with. Lots of lots of milk too.

@Nettleskeins I have our HV coming to discuss weaning in 2 weeks find but might ask her to drop in a bit earlier.. I think I definitely need to revisit this whole thing with the GP so we can get to the bottom of whether this is reflux or allergy…I just feel we’ve been trying for so long and not getting anywhere (probably not as long as I make it sound like but it feels like forever, just feeling sorry for little one and myself lol)

That's great, if you don't mind me suggesting I would be sure to mention
-prolonged feeding time since birth
-aversion to feeding (distress on sight of bottle)
-trialled carobel was successful then stopped working

Try breastfeeding again, not sure where you are but there's volunteers who will sit with you (or did precovid) and help, some are experienced in introducing older babies. One of mine had to have Zantac twice a day despite breastfeeding so it's not necessarily the answer but it's cheaper than formula and easier than bottles if expressed milk

@littleducks you are so helpful thank you so so much! You seem to know so much about this ☺️

@motogogo unfortunately that’s not an option. We tried numerous times and never DS never managed to get the hang of it which I found if very difficult and mentally and emotionally draining, and started getting very anxious so we just decided to stick with the the bottle. I am happy with our decision and I don’t think I can give it another go now

We are having the same dilemma. Our little one also has a reflux however omeprazole has done little good. His feeding also takes upto an hour. Even we suspected cmpa but that was negated by a paediatric consultant. At Kingston Hospital the paediatric consultant asked us to ask are GP to refer us to speech and language therapy. They are expert in assessing feeding and eating issues in infants. Try doing the same.

@Coxobaby it’s so hard isn’t it? It breaks my heart to see him upset and at the same time I’m also so frustrated that I can’t help him. We have good days when I get my hopes up, and then we’re back to square one the next.

I am submitting a referral for SLT as well. How is your little one? I hope it’ll get sorted for you soon!!

We are waiting for their call. I don't even try to do breastfeeding because I am afraid how much he is going to have. I am expressing all the time. He is just 7weeks old. I don't know what happened to him. We used to do pace feeding because he wqs so good on bottle but now he refuse bottle most the time he start crying while feeding. Sometimes he doesn't suck at all & go back to sleep. It took us 1 hour to feed another half we keep him upright in our arms because of reflux and we barely sleep. Seems like we have only thing to do is to feed him. I forget to mention. Check your baby tongue is he suffering from thrush? Sometimes baby who have thrush refuse the bottle.

[quote MamaToAron]@TakeMeToYourLiar thank you for the insight! Did you find it difficult to completely cut everything out? The obvious things I imagine are easy, it’s more the products which ‘may contain milk’ I’m worried about. Is it easy to find replacement products?

@littleducks thank you, will definitely speak to the doctors as well to see if they could refer us! X[/quote]
I don't avoid may contain. Only products where it is an actual ingredient

@Coxobaby I contacted the as well, they've emailed me back that they will forward the request to the approproate therapist, so hopefully we will hear from them soon! Aron was exactly the same, he had amazing appetite and usually even asked for more than what was 'expected' for his age/weight (possible because he was premature and tiny, so had to catch up?). And all of a sudden everything just went awry, and I'm dreading every feed. The only time he eats nicely is when he is drowsy or asleep. He does have a bit of a thrush which used to be pretty bad, but we finally have the right medication for it now so it's much better. I thought that might be the issue initially but he's had it for ages, even when there were no issues with his feeding. Plus it's significantly better now so shouldn't cause so many problems anymore.. :(

@TakeMeToYourLiar thank you, I will give it a go :) xx