Going mad trying to work out what's wrong with my 5 month old ( feeding difficulties)

[veryworriedme]

From birth there has been problems.. Gave up bf at 2 months then tried to express every feed then diagnosed at great ormond st with milk allergy and put on hypoallergenic milk ( neocate ) for last 3 months with little improvement , endoscopy showed nothing, now due to go under general for second time to have botox injected into rectum (!). Great ormond st I feel have given up as they just don't know what is wrong. I am endlessly googling trying to work it out. Feeding her is a full time occupation - she screams etc at sight of bottle and you have to try every few minutes until she will eventually take it. Even then she will only take a small amount. She is losing weight although not too dramatically as I basically have to force feed her. She is uncomfortable most of the time but happiest on her back. Very occasionally she will take almost a whole feed fairly calmly so I know it is possible for her to do so. So if it's not an allergy ( should be better by now) and not reflux ( great ormond st say reflux doesn't cause pain and anyway she doesn't seem to quite fit the symptoms) what on earth is wrong? Dysphagia?Has anyone experienced this sort of problem? Sorry for the incoherent rambling post...not sure what info to give and i could go on and on with symptoms. I am pretty desperate as I feel it has been left to us to diagnose. I am due back at work next month and at the moment it is still impossible to even leave the house with her. Any advice hugely appreciated...

Sorry, I don't have any advice but maybe try to post this in Breast and Bootle feeding here and you might get some good replies.

reflux most certainly can/does cause pain

have you googled silent reflux?

Thisisyesterday, yes I have researched reflux endlessly as that was my first thought. Dd doesn't seem to exhibit some of the classic signs such as not liking being on back or scrunching legs up etc. Also she can be ok once you stop trying to feed her whereas I think reflux babies have the problem after feeding? I am so confused by the advice at great ormond st. We saw that gastroenterologist as he had been so highly recommended in threads on reflux sites, he is some sort of reflux guru apparently, and then he said babies under one simply don't produce the acid to make refluxing painful and if there is pain it is because something else is going on to change the way the nerves react to the refluxing.....going pretty potty with all the conflicting views of the medical profession to be honest.
Inseine - thanks, will see if I can work out how to do that.

gosh, it sounds really stressful, and horrid for both of you :(

in terms of the feeds themselves, have you tried different methods of giving milk? I wonder if she now associates the bottle with something bad and has a negative reaction?
you can cup-feed a small baby, or spoon feed her, or try something like the haberman feeder which is designed for babies with cleft palates etc but might just be a different way of getting milk into her that she doesn't associate with a bottle?

can i ask why you gave up breastfeeding? was she exhibiting symptoms before you stopped?

This may be completely unrelated to your dd's problems but I've had a hard time breastfeeding my DS since birth - fussy feeds (usually but not always), screaming during feeds and at other times, generally uncomfortable and unsettled. I thought it was silent reflux (GP didn't disagree but was a bit non commital) but ranitidine made no difference. Also tried being dairy free for 4 weeks, again no difference. I finally got so fed up I paid to see a Lactation Consultant 2 weeks ago when DS was 4 months, turns out he had a posterior tongue tie which we got snipped 10 days ago and which seems to explain many of his symptoms. Not seen a great change in him yet but have been advised that improvement may take a while.

I realise your DD is bottle-fed and as I say this may have nothing to do with her problems but you can get more information from the Milk Matters website about tongue tie.

Hope you get to the bottom of it soon. It's very stressful when they get so upset feeding isn't it?

Thisisyesterday - yes she certainly associates the bottle with misery and so I may try what you suggest. Really hard though as she is struggling and writhing all over the place! When I was bf I don't think she was as miserable but it was really hard work - feeds would be non stop ( breaks of 15 mins or so) and I was so worried she was not getting enough (and because I needed to get off the sofa) that I started expressing every feed. At that time she did not sleep, sometimes for 14 hrs at a time so I found expressing really hard though I kept it up for a further month. However GOSH said I must not give her expressed milk and so I gave up, thinking the hypoallergenic milk would resolve the problem. Sometimes I feel very angry about this but the reality is that I think if I was still bf I would be endlessly stressing about milk supply etc on top of everything else.
Apricot - thanks for the suggestion. She has been checked for this, my ds had it snipped and it did make a bit of difference with bf him ( straight away).
She has refused to feed at all before going to bed and post bath has been the best time in the past so am feeling a bit depressed......

presumably they thought it was a lactose intolerance? hence giving you the neocate

hmmmm it's certainly a puzzler isn't it

i am going to ponder this some more.. so:
possibly less miserable whilst breastfed (but there was still enough concern that GOSH felt it was a milk issue?) but feeds very very long, baby awake for very long periods

change to neocate but no improvement... so not a milk issue? but baby still very unhappy and reluctact to feed. happier lying down which maybe rules out reflux?

it kind of does point to some kind of pain issue doesn't it?

When are they advising you to start weaning?

Nowhere near as severe as your DD, but my DD2 dropped from the 99th centile to the 2nd at 5mo. She was ebf but just didn't want to feed. I started weaning at about 5mo and she ate like I hadn't fed her since birth. She is now 12mo and on the 50th centile.

My point being, perhaps she will do better when she can start solids.