Posted By Posting
Jan 07, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Oral feeding after tube - advice needed
My son Charlie started life bottle feeding w/NG tube as backup due to his cleft palate. He did great on the bottle but we had to stop when he was about 8 months old due to aspiration problems. He had his cleft palate repaired in December and the dust has settled and I am eager to get the signoff to start feeding by mouth (another barium swallow study). We currently have a speech therapist who is working with him on tackling the oral aversion and she will continue on with speech. She suggested we get a more focused feeding specialist to help with more techniques. Would love to get any advice on what to look for in a specialist and expectations for progress. Right now we are at the stage where if you are playing with him you can put a spoon or other tool on his lips, he might push it away about 50% of the time. Thanks, Susie
Jan 07, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'd make sure he passes the swallow study first before doing oral feeds. I'm sure you know that already.

Congrats on getting ready to do oral feeds though, that's exciting.

I'd look into an OT how is trained to work with feeding aversion kiddos. Keep the ST as well, they can work on speech issues. We did both for about 6 months with Jedd. It worked out great for him.

Tools and "naked" spoons are certainly the way to start though. You may get a surprise though, once he passes the swallow study he may just start eating for you. Ya never know.

You may also want to do an UGI to get a take on how things look structurally as the swallowing occurs too. Just a thought, since there was a repair to the cleft.

Jedd's OT has special training to work on oral muscle control. So I'd ask about that when you look for another therapist.

Jan 08, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Thanks for the ideas. What is a UGI? Whom do I ask about that? GI? ENT?
Check with your
doctor first!