anyone had experience with feeding tubes and weaning them off?

[potty]

Hi my daughter is 8 months old and is still tube fed, i.ve tried everything to get her to drink and she flatly refuses, she has no problems with her swallow reflex, she just doesnt want to, she is also refusing to eat now and im at the end of my tether....can any one help?
I.ve got dieticians ans salt involved at the mo and they dont help, i need some one with first hand experience. my daughter will not suck a teet. xx

 

[divadexie]

have you tried a sippy cup, or beaker?
I was (apparently) drinking from a beaker when I was 8 months.

 

[potty]

thank you for responding. i've tried everything, i've got a whole host of stuff from dummies to bottles to cups, nothing works xx

 

[claire_street]

how you tried giving her solids? even if you start with just giving her babys breakfast stage 1 you can mix it with her milk so u know that shes getting the nutrians (sorry about the spelling not to sure how to spell it) that she needs.

 

[nkbapbt]

It sounds like she oral aversion, which is very common with premmies who are tube fed. I have a ton of information for you but I am just about to run out the door. I will post ASAP (tonight I promise) all that I can.

My son is fed all his liquids via a g-tube, so I know what you are dealing with.

I will be back I promise!

 

[nkbapbt]

I am a jerkface. I fell asleep (pregnant!) last night...sorry.

Here is a very good link that might help (I know your baby doesn't have a g-tube but the info should still apply) Weaning from Tubes

I would also check out this website: Oley Foundation

And this one: Popsicle Center

Information about oral aversion

This is a MUST READ

It really sounds like you are dealing with oral aversion, which is extremely hard to work out sometimes. Basically every thing around her mouth needs to be positive. I know it can be frustrating at times, but forcing (not saying you are though) or pushing will not help this get better.

Some positive play suggestions (I used these to avoid oral aversion with my son):

Kiss her mouth, blow raspberries, blow on her...whatever she likes around her mouth/face.

I would suggest letting her play with her food, finger painting with purees is a great way to let her make a mess and hopefully get some in her mouth too.

Try using different textures of things around her mouth, like silk, satin, whatever...and doing tons of mouthing play if she will let you, if not just let her explore on her own.

Does she use a paci? If so try dipping it in different purees to help her learn that food is ok, and explore different tastes. You can really dip it in anything safe for her to try.

Also vibrating teething toys are AWESOME, I highly suggest getting one. Babies love the vibrations on their mouths, and this is a positive exp you want to create.

You might be wondering what this has to do with feeding, but so far she has likely had negative experiences around her mouth (tubes..that sort of thing) and these things create positive experiences which will over all help with feeding. It will not happen over night but you can get there. Everything regarding feeding (frustratingly) needs to be slow, the harder oral aversion babies are pushed the more they get defensive.

Have you talked to your doctor? Because it sounds like you really could use the help of a speech therapist (they also deal with oral aversion), who could help you work this issue out.

Also does she have reflux? It might something worth getting checked out, even if there are no outward signs of reflux, that does not mean it is not there. Silent reflux is very common (my son has it) and it's just as bad for babies. This is another common reason babies refuse to drink/eat orally because they learn it cause pain from reflux.

 

[maisiemoo]

Hi, my baby was born with a condition called tof/oa whereby she was born unable to swallow (food was connected to hear windpipe instead of her tummy). Although this isn't applicable to your baby, many tofs are tube/gastro fed for extended periods ranging from months to years. There is a group on facebook (simply type in tofs) and you might be able to get some advice from mums/dads who have had to literally teach their babies to swallow. I know you said she doesnt have a problem with her swallow reflex, but many tofs develop a similar reluctance to feed orally.

 

[jennie-jack]

i have two chidren that have g tubes one is nearly 9 and the other one 6, i hope you can manage to help her off the tube sooner than later.