NG Fed Since Birth...................now 3 yrs old

shaz298 · Joined: 19 Feb 2008 Posts: 36 Location: Fife

Hi All,

Is there anyone out there who's little one was completely NG fed for at least three years before going on to eat 'normally?'

My little one Luuk has been tube fed all of his life ( all except a couple of minths where we force fed him really - not pleasant. Only swallowed with dummy in. And at that time the docs had attached his tongue to his lower lip because his lower jaw was so small)

He is very orally defensive, but he seems unable to swallow even his own saliva?? Don't want to push it on him and this would be unsafe as docs haven't been able to establish if he has a safe swallow anyway.

ANyone got a story with a happy ending to share and maybe some tips?? I do try and not get stressed about it. He needs to eat, can't do it orally so this is just how it happens but would be interested to hear from others in the same boat..

OR do you have an older child ( or do you yourself) feed completely through a tube? How doe sit affect you socially etc?

I was laughing with my mum the other wook about how when Luuk's older hat it will be really cheap for him to take his girlfriend out for dinner. I can imagine him saying. ' you choose anything you like, I have my own with me!!'

Any input would be great.

Thanks

Sharon
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Sharon, mum to lovely Luuk! (aged 3, unrepaired exomph major)

keiras mom · Joined: 19 Sep 2008 Posts: 4

Has anyone suggested a swallow study. Not sure how they do it exactly but would show you exactly whats going on with him. Children that are tube feed for long periods of time do obtain an oral adversion and they do it when they learn whatever they eat hurts them. My daughter started throwing a fit when we tried to feed her and she'd cry. She had reflux. We are considering the study for her. She has a feeding tube directly in her stomach. THe ng tube that she was fed with in the hospital held her sphincter open. You might consider the g tube surgery. It will allow his sphincter to heal and you wont have to go around with the tube hanging out his nose. You can tell our daughter has the stomach tube. It fits under her clothes. good luch

shaz298 · Joined: 19 Feb 2008 Posts: 36 Location: Fife

Hi,

Sorry took so long to get back to you. Luuk doesn't seem to be able to swallow which is getting in the way of doing the swallow test. Unfortunately due to his very abnormal anatomy it has been impossible until now to place a G-tube. He's due to have surgery on his foot eary next year and the docs are going to try their best to find an area of stomach which is suitable for a G-tube.

We're waiting on a date for an MRI so that will help re position etc.

Thanks for replying though. Hope your daughter's swallow test goes/went well.
Take care

Sharon
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Sharon, mum to lovely Luuk! (aged 3, unrepaired exomph major)