Can anyone let me know what to expect? FF Baby Feeding Issues - Nutritionist + GI Consult

[OpheliasWeepingWillow]

My FF DD has had horrible problems eating - clicking, reflux (?), milk allergy (?), to the point where she will only eat (drink) asleep in her car seat. Now she's rejecting that too.

She has only ever eaten 1oz, 2oz, 3oz at a time and takes about 20oz a day with a LOT of persuasion :(

She's sliding down the centiles.

Anyway, the pediatrician has referred her for emergency consult with a nutritionist and a pediatric GI specialist.

What can I expect? Am at my wits end and honestly just don't know how they can help her.

She has been on Ranitidine, soy formula, HA formula (would not drink), colief, infacol, Losec Mups, god knows what else. She also has eczema...

Has anyone any any experience of a FF baby who will not feed?

Despairing... and scared of invasive tests on DD

How old is your dd?

My ds was like this and completely refused his bottle when he was about 3 months old.
It was back in the days where it was OK to wean at 4 months old so we ended up starting a week or so ealier.
He was allergic to milk (soya didn't go down well either) but being able to have solid meant he was still eating. (In a strange way, he would not take a bottle but was OK with food that had some albeit not a lot milk in it).

DS2 (severe reflux) went like this around 4 months ish, it seemed he worked out that feeding was what was hurting him, he wouldn't BF or take a bottle, used to feed him in car seat as he was falling asleep or otherwise 'trick' him into latching on during a cuddle in the morning. I managed to syringe some into him, have you tried that? If she likes the taste of the medicine she might be tricked. Luckily it didn't affect DS weight for too long as we upped his dosage of everything and he gradually relearned that feeding was ok really. Also as lady says he was due to wean soon (though that brought its own difficulties) and when he weaned I gave him loads of sugary stuff.

Thank you both so much. There has been a lot of tears on both sides here the past few months days.

My DD is 5 months and I weaned her onto some solids at 17 weeks because of her issues. She's still dropping centiles though...

Lady what and how did your baby drink liquids? Mine will not take a cup or a zippy cup :-(

combineharvester syringe does not work - just pours out the sides of her mouth.

She has been taking about 7oz in porridge / puree a day with no problem, but no more.

It's so upsetting to see 'other' babies downing 8oz bottles. She must be so hungry.

We've even got to the point where she does not cry in hunger... horrible. She'd rather sleep than feed.

I did try a weird soft rubber nipple earlier which she sort of chewed on (result!) but no latch.

It's reassuring to know that other parents have gone through this.

combine how did you manage to train your baby that bottle was OK and what meds got it under control? We are on low dose losec and as far as I can see Ranatidine was better for us.

Well the medication did not completely eradicate it but he got a lot better around 8 months and completely outgrew it at 18 months. He was on losec but they put him up from a low dose to a medium dose, they really need to make sure the dose is right for the baby's weight and unfortunately this means you have to weigh them a lot.

He preferred BF (hated BF less!) but we also gave him bottles particularly when out at non mum friendly occasions as a screaming back arching choking baby exposes any amount of nipple :) tried all sorts of formula, the nutrimagen type ones I think taste foul which didn't help, pepti junior I was told tastes sweeter. As dairy intolerance was not proven only suspected I ended up mixing it with cow & gate comfort to make it taste normal! I used to give solids first to ease hunger then cuddle him and gently get him to latch on / put small bottle in. He used to have dummy which made things easier as he wasn't scared of having stuff in his mouth!

I would think if your DD has actual dairy allergy then this is proveable, have they tried her on neocate? Apparently tasted better than cat sick nutrimagen! Does she actually vomit and is the clicking noise still there?

STOP - I forgot about the stupid musical toy! There was a cuddly toy which played classical music that I used to put on at every feed - it really relaxed him and I had to put it on at every feed for months! I can't believe I forgot that. Must've blocked it out.

Thank you again. The GI specialist didn't speak much English (I live in Asia) but stopped the loses, started ranting again, added motilium and probiotics. We've got an appointment with a 'Western' Pediatrician on Tuesday. I hope this resolves :-(

I'm bumping this as now my DD is refusing solids as well as the bottle. We've started HA formula, are on 30mg raniditine x 2 a day and motilium 2ml x 3 a day since Saturday. She's gone to bed on an empty stomach and I just don't know what to do...

Can anyone reassure me that this will get better?

bump...?

Ophelia is she drinking any other liquids? How much and how often is she currently drinking milk? I'd leave the solids if she's not taking them, the milk is the most important thing. What formula is she currently on? Is she otherwise well and alert?

Sorry no advice but this sounds really difficult so bumping for you.

Also have you posted for advice on the breast/bottle feeding forum? There may be some reflux survivors there with good advice.

I really hope things are better in the morning.

Hi there,
My ds was exactly same.. He never ever took more than a 3 ounce bottle right up Untill he was 15 months. He never lost weight but only gained very slowly started out in 75th centile and ended up on 9th. Tried all the meds you have mentioned but one we found best was omeprazole, weaning was awful infact made him worse..so stopped all foods Untill he started to tolerate at 8 months. With regards to feeding all you can try and do is persevere, I literally fed him every 2 hours day and night to get something into him. If she refuses point blank then the only option will be to tube feed her :(

thank you everyone. Sorry for late response - it's been a difficult day. She's had 16 oz over the last 24 hours, drinking every 2 hours when asleep and the pediatrician has now put her on Losec 5mg and Neocate (hope she takes it). She also had some puree earlier although most of it ended up on her... She is alert and has wet nappies (I only know because of the indicator line, not because they are soggy). She's not having any other liquids aside from milk. I'd have to use a syringe or something.

If I hear white noise for one more minute I may just cry. White noise, rock, dummy, sleep, bottle... pray for no external noise... relief when dd gets to 2oz, dismay when she pulls away... wakes up... repeat ad infinitum.

Argh. Using super soft anti colic teat / bottle, awake every 2 hours at night to see if she will take a feed...

You poor thing! Must be a horrible situation.

I have heard that the Medela Special Needs feeder teat can sometimes work when all else has failed.

Also, this idea may be a bit 'left field', but have you thought of using a supplemental nursing system? Amazon sell them. Basic idea is that baby takes feed from a very fine tube that runs alongside your breast. You would probably be 'Dry nursing' but she may find if easier to latch on to soft tissue.

Are there any Tongue tie issues?

Oh god I felt the same about the stupid musical toy as you do about the white noise. Neocate could be good, they are reluctant to prescribe here in UK due to cost to NHS but apparently way more tasty than nutrimagen. Obv it will take her a little while to realise there is something in her bottle that tastes better / hurts less than what she has been drinking.

What time are you giving her the losec and how are you giving it (e.g. on a spoonful of puree?)? We were advised to do it first thing in the morning half an hour before feed. How much does she weigh?

Remember if she was breastfed you wouldn't know how much she was taking (although you'd still be as pissed off feeding her every 2 hours ) and 16oz, well she's still getting something. I don't know how much your baby weighs but I know a FF baby of that age who has about 20-24 ounces over 24 hrs, so your baby is only really getting one feed less.

I would also repost on breast and bottle feeding to see what people think, I think you should also see link in with a dietician or infant feeding specialist to see if its possible to 'back off' a little bit now - try to only make up 2 oz bottles, feed on demand, if she won't feed just chuck the bottle away and try again later, see what happens over 24 hours. She's probably too young for this and again it depends what 'reserves' she has - DS was still on 15th centile when we decided to back off a bit, so we had something to play with iykwim.

Possible / probable posterior tongue tie but they won't treat it here.

I'm giving the loses in the morning with water and strawberry puree (she Loooooves strawberry). She's 6 kg so about a kg under her target weight on the original curve.

We are going to feed on demand as soon as she starts demanding food - she simply won't cry for food at all. It's as if she knows it will hurt. :-(

As for dry nursing - I thought of that but I'm on a category X medication and for some reason after 3 months I still have milk. So, don't want to poison baby...

AND, now her tongue has a weird blue sheen, like she's been eating lollipops. (!!)

I don't know what Category X is, but phone the BfN Drugs in Breastmilk Helpline. It is staffed by pharmacists who are also breastfeeding experts and might be able to advise:

0844 412 4665