One of my trio has a feeding tube (Mickey) placed at 11 months old (an NG tube since 4 mos. old). Her diagnosis was delayed gastric emptying and severe reflux which created an eating aversion. Both the DGE and reflux have been resolved for a year now, she had a fundo at the same time as the tube placement, but she still refuses to eat hardly anything by mouth, once a day I can get her to eat Stage 2 baby foods and she will nibble crackers, cookies etc. but even with therapy and cutting back her bolus feeds we hardly see any progress. Its frustrating at best. We are putting all three kids in preschool 3 x's a week next Fall and I am hoping the peer pressure will help her to try more foods. Anyone else w/ a tube fed child?

Becky
Mom to Andrew, Cheyenne and Rheanna 8/13/01

Becky
bgg 8/2001

My daughter had a fundo/gt placement at 16mo. She really didn't have feeding aversions she just wouldn't swallow what she had in her mouth. At 24 months we discovered she had nerve roots exposed in the back of her front teeth. OUCH. It's a pretty common problem to have bad enamel on preemie's. If you see a lot of enamel missing on your daughter you may want to check that out. We also had HUGE tonsils. Doctor after doctor pointed them out but I was too dense to put 2 and 2 together. Once she had the tonsils and adnoids removed she was swallowing and eating like a champ within 6 weeks.

Good luck!
Gina

This is interesting. Thank you for sharing this info. My DD has a dentist appt next month, Ill be sure to ask him about the tonsils and do a thorough exam of her teeth. Thanks again!

Becky
Mom to Andrew, Cheyenne and Rheanna 8/13/01

Becky
bgg 8/2001

My son was tube fed and has a Nissen (fundoplication). He 'only' had his g-tube for a year (we were initially told it would be 2+ years). He had the g-tube because of short gut and had continuous drip feeds with a pump 24 hrs a day. His sytem couldn't handle bolus feeds. We were able to wean him off the g-tube by very slowly increasing his nipple feeds. He is the exception, in that he did not have a feeding aversion, and that was one of his saving graces I think. He has major sensory problems and is a sensory seeker not avoider. He still needs a lot of stimuli in his mouth before eating to stop him from overstuffing.

My other son has a lot of sensory problems too and avoids the stimuli and has had lots problems with oral aversions, so I do understand a little bit of what you are dealing with. It took a year of weekly therapy for him to be able to put a small piece of a carrot in his mouth and chew on it twice without throwing up ! He does much better with certain textures still.
Have they eliminated all of the possible structural explainations for her oral aversions ? Does she take meds for the delayed emptying problem ? Is she still on reflux meds, even though she has the fundo ? My son is still on reflux meds, partly because of the short gut though.
Is she in a feeding group at therapy ? I know a lot of kids with similar issues to your DD's who were helped tremendously by the groups as opposed to 'just' therapy.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine,

My DD is not currently on any meds. The only available med for DGE is Reglan and that did not help her and had undesirable side effects. But her last scan showed she was emptying at a normal rate anyway and her Dr. seems to think she outgrowed the DGE. Also she increased her tolerance of bolus feeds and went from 26 ounces a day to 40 w/ no problems.
I think you are right in that a group setting would help DD alot and that is why I am looking forward to Fall when she begins preschool 3 x's a week, there will be plenty of role models for her. At her age ( almost 3) is the hardest time to try to wean because they are so stubborn at this age! They know what they want and dont want to do....Becky
Mom to Andrew, Cheyenne and Rheanna 8/13/01

Becky
bgg 8/2001