Tube Fed Kids - Deserve to Eat

Connecting Parents of Children with Tube Feeding Issues

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Help needed with home wean for 3 month old

Started by Bri Rogerson in Tube Weaning. Last reply by Lisa Argentieri 22 hours ago. 3 Replies

Currently weaning 9 month old

Started by Kate Williams in Tube Weaning. Last reply by Olga on Wednesday. 3 Replies

9 month old to wean or wait?

Started by Sally mccarthy in Tube Weaning. Last reply by Sally mccarthy Jan 24. 1 Reply

Coming to your house post

Started by Markus Wilken in Tube Weaning Jan 11. 0 Replies

Update on the weaning

Started by Ana Morao in Tube Weaning. Last reply by Markus Wilken Jan 11. 10 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.

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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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Christine S. replied to Christine S.'s discussion Ella's tube journey and what worked for us
"We qualified for early intervention therapy and saw a feeding therapist once a week. She was helpful. You need support in this. There is a weaning program at Seattle childrens hospital but you need to be over a year. And I recommend starting solids…"
7 hours ago
Olga replied to Christine S.'s discussion Ella's tube journey and what worked for us
"The so-called Nissen is actually somewhat controversial, and whether docs recommend it depends quite a bit on what hospital they work for. Some places are pro-Nissen, some are not. The biggest indicators that I know of, from the literature, and that…"
21 hours ago
Sarah replied to Christine S.'s discussion Ella's tube journey and what worked for us
"Thanks, Christine. We are will probably start home therapy sessions with the Boyer Clinic soon (we are in Seattle). It will be nice to have a care plan. Right now it seems like we are trying something new after every OT appointment. We've been…"
21 hours ago
Lisa Argentieri replied to Bri Rogerson's discussion Help needed with home wean for 3 month old
"Thanks Bri. It's so difficult to keep the weight up as well as keep them hydrated. I have doctors who say that we must wean my baby from the ng tube, even if she goes down in weight, while Others say it is important she grows well during her…"
22 hours ago
Bri Rogerson replied to Bri Rogerson's discussion Help needed with home wean for 3 month old
"Hi Lisa, I wish I had some suggestions. In order for our little one to gain weight we had to increase his tube feeds by one millimetre a day and fortify his formula with extra calories. That seemed to help but his oral intake stayed the same."
23 hours ago
Christine S. replied to Christine S.'s discussion Ella's tube journey and what worked for us
"Hi Karina, I know what you are referring to, but no Ella didn't have it done. Did your little girl have reflux before the Ng? And is the Ng in her stomach or in the intestines? That can make a difference with tolerating feeds too. Also will she…"
23 hours ago
Lisa Argentieri replied to Bri Rogerson's discussion Help needed with home wean for 3 month old
"I actually need to do the same thing with my 6 month old baby girl. She has been on the ng tube for 4 months and is already under weight. I have the same questions as you Bri. Thanks in advance to whoever can give us advice based on their past…"
yesterday
Karina replied to Christine S.'s discussion Ella's tube journey and what worked for us
"They did a study on her and it showed that she would aspirate even on the thickest liquids. She was able to take the able and drink about an ounce before this study was made since then she has no idea what to do with the bottle now. And she…"
yesterday
Olga replied to Bri Rogerson's discussion Help needed....Home wean for 3 month old in the group Babies Under 12 Mths--Weaned, Weaning, or Wanna Wean
"I've thought about this is many ways over the years. Another one is: a doctor's lack of experience, information, or courage is not a sufficient reason to keep a child medically special-needs and tied to life support devices with no end…"
yesterday
Bri Rogerson replied to Bri Rogerson's discussion Help needed....Home wean for 3 month old in the group Babies Under 12 Mths--Weaned, Weaning, or Wanna Wean
"Those are very powerful points!! I will write those down! Again...I can't say enough how thankful I am to have found this site. It has kept me sane and given me support in times when I thought I would break!"
yesterday
Olga replied to Bri Rogerson's discussion Help needed....Home wean for 3 month old in the group Babies Under 12 Mths--Weaned, Weaning, or Wanna Wean
"Anytime you can remove dependence on an invasive medical intervention, it's a good thing.  Some issues with NGs: - damage to skin - interference with swallow - risk of shift/dislodging during sleep, with dangers of aspiration - trauma on…"
yesterday
Bri Rogerson and Olga are now friends
Friday

Blog Posts

G-Tube Free!!

Posted by Melanie on January 2, 2015 at 5:02pm 2 Comments

Here is our praise report for 2014!

Our son Elijah was born 3 months premature in November 2012.  Because of how early he arrived, there were various complications including the ability to eat on his own.  After a 3 month stay in the hospital, Elijah was finally able to come home, but would still need assistance eating.  For one year, his feeding was supported by the use of a nasogastric (ng) tube.  It was a tube that was inserted through one of his nostrils down to…

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I am dying for advice - My daughter on NG tube and will not take a bottle

Posted by Vanesa on December 21, 2014 at 9:16pm 8 Comments

Hello all,

I am eager for some advice as this situation is really killing us and unfortunately, we don't have any confidence from my daughter's doctors

We are parents to a beautiful baby girl daughter who is 4 and a half months old and had to go through a very rough start. She was born with diaphragm nerve palsy and spent 1 week in Nicu with CPAP, tubes coming from everywhere and continuous tests that  no…

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Need advice please!!

Posted by carrie on November 22, 2014 at 2:56pm 9 Comments

Hi everyone. I am a new first time mom of a beautiful baby boy named parker. He is 17 weeks old and 8 of those weve spent in hospital for a couple different issues. He was born full term at 41 weeks but he suffers from silent reflux and the doctors say that is why he refuses to eat enough . He had a ng tube put in 4 weeks ago and seems to be refusing the bottle even more now thab before. Im scared to death of him becoming dependant so i am going to pull the tube in the next week or 2 but i was… Continue

EDS twins

Posted by Catherine Halliday on October 28, 2014 at 1:29am 0 Comments

All three of my children have EDS
all three have severe laryngomalcia (amongst other issues) 2 year old daughter has had tubes on and off in first year of life but twin boys (4months) have been sent home from their surgeries with them. Ng 6fg. Have been trained to feed but not put new one in when pulled out. Max once pulled out his 3 times in a day. Going to be interesting ..... -_-;

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