Tube Fed Kids - Deserve to Eat

Connecting Parents of Children with Tube Feeding Issues

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Success with older kids?

Started by Jeannine Militello in GRAZ FAQ. Last reply by Eva Kerschischnik on Tuesday. 1 Reply

Notube netcoaching success with older kids?

Started by Jeannine Militello in Tube Weaning via Email Coaching. Last reply by Eva Kerschischnik on Tuesday. 2 Replies

5 month NG tube wean.

Started by Josie in Tube Weaning. Last reply by Kerry Mar 28. 18 Replies

Trying to wean almost 8 Yr old

Started by Jeannine Militello in Tube Weaning. Last reply by CarylK Mar 26. 1 Reply

How to choose a tube weaning program

Started by Eva Kerschischnik in Tube Weaning. Last reply by Eva Kerschischnik Mar 11. 4 Replies

weaning program choice

Started by Katya in Tube Weaning via Email Coaching. Last reply by Eva Kerschischnik Mar 11. 3 Replies

 

Notes

Donation to TFK

Each year Tube Fed Kids pays a subscription to NING to stay online (it used to be free).

Membership to Tube Fed Kids is FREE and we would like to keep it that way.  The subscription each year is $240.00 US dollars.  Last year members kindly donated what they could afford towards to cost of the annual subscription which was enough for 18 months.  I have just paid for the next year Aug 2012-Aug 2013 by paypal. If you are willing to…

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Created by Karelle Aug 23, 2012 at 2:04pm. Last updated by Karelle Aug 24, 2012.

Message from TFK Moderator

This forum is a way to share experiences about Tube Dependency, Tube Feeding and Tube Weaning. Members of TFK are mainly parents who have been through the Graz method or who have used the principles of child-led, caloric-reduction style of tube weaning. Or they are TFK members who are Health Professionals interested in learning more from families and their experiences.

Read Before You…

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Created by Karelle Mar 14, 2012 at 6:42am. Last updated by Karelle Apr 7, 2012.

Purpose of this Forum

The membership of Tube Fed Kids is primarily parents of past and present tube fed children.  The forum is solely for the purpose of sharing experiences and supporting other parents during their own tube feeding/weaning journey. 

This site is run by parents for parents. Tube Fed Kids is a totally independent parent social networking…

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Created by Karelle Jan 5, 2011 at 10:06pm. Last updated by Karelle May 1, 2011.

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Latest Activity

VeLynn Tapia commented on VeLynn Tapia's blog post No Aspirating!!!!
"Kerry and Olga, Thank you both soooo much for your comments and sharing the details of your weans. It is so helpful and encouraging as well. I also appreciate the comment about the feeding therapist. I talked to some and just couldn't believe…"
4 hours ago
nina posted a discussion

Need help getting off ng tube

My 5 mth old has a ng tube and won't suck on a bottle now. Previously he only drank a few ounce. He had a weak suck and this is due to a neurological condition. He eats a few spoons of purée reluctantly and has safe swallow. Fluids he has overnight ng tube high cal milk but daytime a few sips from sippy cup if held over his mouth or by syringe or spoon. He has no hunger and can't suck anymore due to weak muscle tone. I don't want a g tube for him and just want to get off the ng tube. Can anyone…See More
11 hours ago
nina left a comment for nina
"Please can anyone help us - desperate I have a 5 mth old baby who was diagnosed with a congenital neurological condition that has effected feeding. From birth he never sucked on a bottle well, milk dripped out of the sides of his mouth a lot. His…"
11 hours ago
Olga commented on VeLynn Tapia's blog post No Aspirating!!!!
"Hi VeLynn -- We also had major aspiration, which put us on tube feedings with NO oral intake at all (nothing, not a drop) for 14 months, from the time he was 8 weeks old. We weaned by reducing calories, keeping food fun and relaxed, never forcing or…"
12 hours ago
Kerry commented on VeLynn Tapia's blog post No Aspirating!!!!
"VeLynn, I did the help on my own with the help of comments on this blog as well as encouragement ftom markus wilkins, who also posts to this blog. We put a plan in place before beginning. My daughter wouldnt go back to a bottle after aspirating. So…"
12 hours ago
VeLynn Tapia commented on VeLynn Tapia's blog post No Aspirating!!!!
"Also, Kerry....did you do the wean on your own or did you get help?"
13 hours ago
VeLynn Tapia commented on VeLynn Tapia's blog post No Aspirating!!!!
"Kerry, Thank you so much for sharing about your wean. What day did your child start to eat? And when did you stop the tube feedings all together?"
13 hours ago
Kerry commented on VeLynn Tapia's blog post No Aspirating!!!!
"We did our wean after surgery which corrected the aspirating at 6 months. Do you have a plan?? We did the 10% reduction for 5 dsys, so at day #5 we were down to 50% wean and our plan was to stay there but not let our daughter drop 10% of her…"
yesterday
VeLynn Tapia posted a blog post

No Aspirating!!!!

We just went back for a swallow study a few days ago and Donovan didn't aspirate anything!! He is cleared to eat anything orally. He will take purees by mouth a little if he is very hungry and will take a little from his bottle if he is very hungry as well- maybe 1/2 and ounce. Is is now in the 15th percentile weight wise, but our doctor wants to see him stay there for awhile before we wean completely. He is also refering us to the feeding team at the Children's hospital here (Riley-…See More
yesterday
Olga replied to Jeannine Militello's discussion Still maintaining weight 2.5 weeks later. Time to try Wean to almost no tube?! in the group Home Based Tube Weaning
"Cool! Yeah, you know, we had/have similar issues with our 10-year-old daughter, in terms of talking a lot and trying to understand a lot about her body (whcih is entering prepuberty, so things are definitely changing). She had dizzy spells,…"
yesterday
Jeannine Militello replied to Jeannine Militello's discussion Still maintaining weight 2.5 weeks later. Time to try Wean to almost no tube?! in the group Home Based Tube Weaning
"Thanks for replying! And for asking how we are! She's talking a lot about her eating and how she's feeling. For example, "maybe I have a headache because I didn't drink enough or eat enough, etc.". Obviously we've…"
yesterday
Olga replied to Jeannine Militello's discussion Still maintaining weight 2.5 weeks later. Time to try Wean to almost no tube?! in the group Home Based Tube Weaning
"Hi!  Oh my gosh, 1500mL of water? That's the Holliday-Segar calculation, and by that standard, by children should all be prunes or dehydrated mago slices walking around. I would take that number with a grain of salt (as our pead put it,…"
Thursday

Blog Posts

No Aspirating!!!!

Posted by VeLynn Tapia on April 18, 2015 at 9:13am 6 Comments

We just went back for a swallow study a few days ago and Donovan didn't aspirate anything!! He is cleared to eat anything orally. He will take purees by mouth a little if he is very hungry and will take a little from his bottle if he is very hungry as well- maybe 1/2 and ounce. Is is now in the 15th percentile weight wise, but our doctor wants to see him stay there for awhile before we wean completely. He is also refering us to the feeding team at the Children's hospital here (Riley-… Continue

Dutch

Posted by Colleen Anderson on March 28, 2015 at 4:34am 1 Comment

My son is just about 8 months old.  He was diagnoes with FTT and possibly GERD at 4 months old and that is when the NG tube went in.   He takes about 40-50% by mouth and his vomiting has decreased significantly.  We were on both zantac and prilosec  but are down to prilosec only.  I don't feel that his pediatrician really knows what to tell us.

The Gastro says he needs to be consistently in the 5th percentile on the weight chart and taking majority of feed by mouth before tube can…

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Our story- 6 month old

Posted by VeLynn Tapia on March 23, 2015 at 10:24pm 0 Comments

Our baby, Donovan, was 6 months old and barely 12 lbs. He was born 6 1/2 lbs but spent a few days in NICU because of lung problems. When he was able to breath on his own, we brought him home. However, he had a hard time nursing. I thought he has nipple confusion because he got a pacifier in the NICU. I worked REALLY hard to get him to nurse. He ended up loosing weight- went down to 5lbs 12 oz before I finally bought a bottle to feed him. Suprisingly, the bottle helped him learn to suck a little… Continue

our story

Posted by Cicily Durr on March 7, 2015 at 2:31pm 2 Comments

Hello everyone, My son sam has had his ng tube for 2 months now. He just turned a yr, still not much of an appetite. He gets 4 bolus feeds in a 24 hr period, Drs switched from pump to gravity feeds which he has been vomiting up. He is going to start prilosec. He's never been a big drinker of formula and has always been small, Drs diagnosed him with failure to thrive and put in tube in a Jan, with hospitals stays and rsv, he will not eat baby food anymore only crunches and crackers. I think…

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