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Struggling with an 8 month with oral aversion

32 replies

MelanieK123 · 30/04/2015 11:51

My daughter has severe oral aversion which started at the age of three weeks old with what I know are symptoms of cows milk allergy.
Despite me taking her to the Dr's constantly and having had numerous visits from the health visitor, this was not diagnosed until she was four months old and after five hospital stays due to her poor feeding and lack of weight gain.
She would scream when presented with a bottle, arch her back and she had diorrhea, severe vomiting, stomach aches, colic and was covered in excema. She was put onto a hydrolysed formula but still the stomach aches and vomiting continued. Due to the amount of hospital stays she had she was discharged with an ng tube to be used only during an episode of refusal.
In January I was desperate and managed to persuade her dietician it wasn't reflux to put her onto an amino acid based formula. The physical symptoms disappeared instantly but to my horror she appeared to dislike the taste and would scream and fight me if I put it anywhere near her. She also stopped showing any sign of hunger and would rather starve than drink.
Eventually after months of struggling a speech therapist came to see us in March and told us to stop trying to bottle feed and to put all milk down her tube and to concentrate on weaning her. They then discharged us.
I have been trying since she's been 4 months to wean her. She will mouth toys but when presented with food she is reluctant to pick it up let alone put it in her mouth. In the last week I have managed to get a spoon of purée to her mouth but this relies heavily on the TV for distraction and her toys.
We saw her peadiatrician last week. He spoke to us about a g tube insertion straight into her tummy I feel this is moving the problem rather than addressing it and solving her aversion.
He has also re referred us to speech and language as he felt we shouldn't have been discharged. This is likely to take another few months to come through like the original all the while when I have a baby who refuses to eat. I feel a bit desperate for her I eat and really isolated as I don't know anyone experiencing anything similar to me. Is there anyone out there who understands?

OP posts:
lastlines · 03/05/2015 21:21

Melanie, if you can go privately to SALT, do. Sounds like they are overloaded or just not on top of things in your area.
I sympathise with you not feeling like facing the surgery. We backed off a few invasive treatments because it felt like our lives were based in endless over heated hospital waiting rooms where nothing ever improved.
Everyone is sending you the same message that it was hard but it does come to an end. I hope that's comforting.

JoandMax · 04/05/2015 06:10

Argh, wrote a long reply and lost it!!

In terms of the gtube and practicality I actually found it easier than the NG. DS2 didn't get on with a pump so I bolus fed and its pretty similar to NG, attach a tube and syringe and pour the formula in! We used used duocal with Neocate and in any food to increase calories. I also found it easier to be discreet, he could sit in highchair/pushchair playing while I did the feed at his shoulder height next to him. I also loved that nobody could see it when we were at groups/soft play, I really empathise with the stares and people not always speaking to you with the NG, I remember coming home in tears many a time!

Its left a small scar, DS2 calls it his 2nd belly button! We have loads of photos around with his tube, its not something we've ever hidden and so far no negative reactions from him or his friends. As far as they're concerned he had a poorly tummy so had a special tube!

I'm not pushing you to go for the surgery, its a huge decision thats different for everyone but hopefully this will allay some of your concerns. If you have any questions please ask, its a really tough time and I do understand x

I would also definitely go for a private SALT, it really sounds like you aren't getting or going to get the support you need.

MelanieK123 · 04/05/2015 06:11

Yes it is and I feel much more positive about things now. Thank you for your help and advice everyone x

OP posts:
JoandMax · 04/05/2015 06:13

Tried to attach a photo! This is DS2 with his gtube, you can just about see in on his tummy!

Struggling with an 8 month with oral aversion
TwiggyHeart · 04/05/2015 06:31

OP I have no experience of your situation. It sounds like you are doing an amazing job under very difficult circumstances. My only suggestion is one of those net feeder bags for fruit etc, they have a plastic handle which is quite toy like, it may be worth a go to try to get some food down.....good luck to you.

MelanieK123 · 04/05/2015 10:01

That's really interesting! Definitely something for us to give some thought to. DD also doesn't get on with the pump so I syringe feed her too so would probably do the same if we had a g tube.
It does actually look very discrete. Much better than the plaster taking up half her face and it would be nice to go to groups and to be talked to normally. I do try and brush it off when people ignore us but it does get to me. Also it would be nice to not be asked about it all the time wherever I go and just go about my normal business.
Thanks for the pic definitely food for thought!
Thanks for the suggestion with the net- we have tried one without success. She is a tough nut to crack! X

OP posts:
Amylunt17 · 02/07/2020 21:32

Hi Melanie - can I ask how your little end ended up doing? It sounds very much like what I’m going through with my 17 week old and I’m exhausted 😩

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