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Weaning

Find weaning advice from other Mumsnetters on our Weaning forum. Use our child development calendar for more information.

Reflux, tube feeds, cleft palate and weaning anyone?

4 replies

Mouseface · 27/01/2010 16:43

Hello all.

I'm new to this (not parenting, asking for help in forums) and have been told that Mumsnet is the way forward re advice so here goes.......

My 9 month old son has a very wide cleft palate, amoungst other issues and is currently on month 5 of weaning. Like others, I was told by his docs to wean early due to his conditions. However, I am getting a bit worried that I will never get him to "eat". He has reflux and has never taken milk from a bottle or cup. He has no sucking reflex. Trust me when I tell you that I have done everything that I have been asked to by his army of healthcare professionals, and read every book / leaflet I could get my hands on. My daughter did weaning in her sleep but had no health concerns to deal with. I feel a bit dispondent now if I'm honest and scared that I'm going to get into trouble for the lack of progress. I'm sure this is something he will pick up!!

He is due for his first palate op in 2 weeks but the few times we've seen his Speech Therapsit, she's insisted he be tube free. Fine, I would love not to have to pass a tube down his throat via his nose on a regular basis but I could just do with any help you lovely ladies may have? Any advice, tips etc? Or dads, sorry!!

I've tried smooth puree, lumpier textures, finger food, at the table with us, toothbrush now he has teeth, cups, bottles, high chairs, pinics on the floor, eating with him, playing choo choo or aeroplanes etc. telly v's no telly. As you can imagine, bit tired now and fast running out of ideas. Oh and he has a milk allergy.

He has 3 250ml feeds per day via a pump which can take up to an hour if the reflux kicks in.

I'd love to hear from anyone who could help. Thank you in advance!!

OP posts:
againandagain · 27/01/2010 20:04

Have no ideas on how to help you! You sound like you are doing amazing, so am just bumping for you really!!

thisisyesterday · 27/01/2010 20:16

hi mouseface

i don't have direct experience, but a friend of mine had a similar experience, her little girl had a cleft palate. she was advised to wean early, but refused and weaned her at 6 months.
iirc it was hard! but basically they got used to food going everywhere/out of her nose etc and just sstuck with it and eventually she had the op and was ok
I believe though that she was only ever tube fed for a short time, and then was given EBM with a haberman feeder (have you seen those?) which worked quite well though still had milk out of nose problems

i'll see if i can get hold of her and maybe you could e-mail her?

megonthemoon · 28/01/2010 10:20

i've no advice i'm afraid but just wanted to bump in the hope someone else can help.

you might also want to try posting in the special needs section in case someone who can help sees it there as i'm sure there must be mums/dads with experience of cleft palate on here.

Mouseface · 29/01/2010 12:26

Thank you all so much for responding.

I will try posting in the special needs section, didn't know about it before now!

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