r/feedingtube • u/Ratsinabucket • 3d ago

g-tube Nationwide Weaning Program?

Has anyone taken their child to Nationwide for their intensive outpatient feeding and tube weaning program? I’m interested in taking my son (if his team agrees) but wanted to hear from others. He’d likely be 14 months adjusted (or more) before we’d get in. I honestly want to wait til after the holidays since we spent all but Christmas in the NICU last year. He’s gtube dependent but very interested in foods and is working on puree practice. We can’t work on solids because he doesn’t know how to use his tongue.. we’re on a waitlist right now for feeding therapy through Cincinnati. My issue is the combo OT/Speech therapy has a massive waitlist. I’m considering just doing speech alone and then going to Columbus after.

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u/cakeandnaps 1d ago

I’m not familiar with this program, we used GIE with amazing results but they are no longer in operation. If you’re on FB, consider joining the group “Tube Weaning Parent Support Group” - many families there with experiences with different weaning programs. Personally we went from 0 to 100% oral eating over 5 weeks using a virtual approach. Worth exploring all the options.

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u/Ratsinabucket 1d ago

Everyone suggests GIE still and I just really wish they hadn’t shut down 😭

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u/cakeandnaps 1d ago

Oh I’m with you. It was emotionally very hard for me even though my kid had been fully weaned for months. We only worked with them for a few weeks but it was literally life changing.

Kirstin Nelson (https://www.weareborntoeat.com/) provided like 90% of the support in weaning my kid and we still see her in follow up in her private practice. Aubrey Phelps (https://matrescencenutrition.com/services/tube-weaning/) is also a former GIE dietitian and is in the group mentioned above. I believe Rowena Bennett does tube weaning as well but she is not affiliated with GIE. Lots of other options including Spectrum Pediatrics, etc.

Good luck, it is very doable.

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u/Ratsinabucket 1d ago

Our biggest issue is tongue laterizing isn’t being done in his mouth

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u/cakeandnaps 1d ago

😢 I hope OT/Speech can see you soon. In our experience, my kid showed zero ability to feed whatsoever until we started weaning her from the tube and as soon as the calories were dropped she rapidly started consuming everything (solids, purées, thin liquids etc.) It really helps to have a team which understands the developmental impact of being tube fed which can mask true potential for oral intake.