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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
11-03-2009, 08:08 AM
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PEG fed- ready for oral challenge?
Hi everyone, I haven't been on this site for a while but wanted to say hi and hope all our kids are doing well and had a great Halloween.
Kristof is now 3yr+ and his weight is doing great after a 3month use of Calogen (high fat supplement). Our SP/lang therapist is keen for him to start an oral challenge. i know there is a tube-feeding site but can't seem to locate it. Has anyone had success with an oral challenge (and do you know the name of the site)? Thanks Petra
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Petra and Colin, Mum and Dad to Conor Feb 02, Imke Sept 04 and Kristof Sept 06 who was trached at 3wks old; arthrogryposis, Pierre Robin, G-tube. Previously vented for tracheamalacia, off since December 07. 
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#2
11-03-2009, 08:49 AM
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We are having limited success with oral feeding with Sam, but he is eating something, it's a long slow process. Maybe you should try PINNT, I think the paediatric one is called Half PINNT
http://www.pinnt.com/halfpinnt-new
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#3
11-03-2009, 09:34 AM
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Aydens eating really started takeing off once we stopped tube feeding during the day,hunger really worked!We supplemented at night,if you do try it the first couple of days hes not going to eat much,but he will get it & he will eat if hes hungry,if hes doing a little eating now,I would go for it.....Angie
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 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!! .Ava 2 years www.aydenava.blogspot.com
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#4
11-03-2009, 10:04 AM
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Hi Petra - Kate is now eating 100% oral after 22 mos with a feeding tube. Like Julie says, it's a long slow process so the sooner you start the better. I found lots of advice and support on this board as well as on the Parent 2 Parent site. I think their site is down right now but here's the link. It's a great site with different forums for eating aversions, tube feeding, etc. Here's the link:
www.parent-2-parent.com/forum/
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#5
11-19-2009, 03:50 AM
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Thanks for your replies. We are now in week 2 of oral challenge and have dropped his day feeds by 40%. His drinking has really taken off and although he mainly prefers water he's drank his formula a bit too. Solid foods he will lick butter and chew on bread. I am so keen to push it further but need to liase with the dietitian more, he has a weight check next week so I;ll phone her after that.
Thanks so much for the link and the "go for it" petra x
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Petra and Colin, Mum and Dad to Conor Feb 02, Imke Sept 04 and Kristof Sept 06 who was trached at 3wks old; arthrogryposis, Pierre Robin, G-tube. Previously vented for tracheamalacia, off since December 07.
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#6
11-19-2009, 11:37 AM
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good to see he is 'having a go' at new things. hope you can progress further xxx
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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