Tube Feeding Support for Families
Families of tube-fed children often face unique issues not commonly experienced experienced by most parents and caregivers. Many parents find it extremely helpful to discuss the challenges and joys of tube feeding with others who have had similar experiences. Whether run by parents of tube-fed children, non-profit organizations or healthcare professionals, support groups offer an environment conducive to posing questions and sharing useful information.
How to Find a Support Group
Contact your local children’s hospital. Many facilities host organized support groups that focus on particular diseases and conditions, such as celiac disease or cerebral palsy.
Look online. Busy parents and caregivers can’t always get to local support groups in person. Online forums serve as a reasonable substitute. Below, are a few online groups.
- Feeding Tube Awareness Foundation http://www.feedingtubeawareness.com/ works to raise positive awareness of tube feeding and to help parents obtain the practical knowledge and support they need. They also started Feeding Tube Awareness Week, dedicated to increasing visibility and acceptance of tube feeding in our communities. It takes place annually during the second week of February. Their Facebook page is touted as the largest online support group for tube feeding in the world.
- The Oley Foundation http://www.oley.org/ provides support to home tube-fed adults and children in the form of newsletters, a video library, an online community forum, regional support groups, an annual consumer conference and more.
- Feeding Matters https://www.feedingmatters.org/ hosts a parent-to-parent online forum to address questions and concerns about pediatric feeding disorders and tube feeding.
- Tube Fed Kids http://tubefedkids.ning.com/ is run by parents of past and present tube-fed children. In the forum, parents of tube-fed children share experiences and support other parents during their own tube feeding/weaning journey.
For more information, see related articles and resources here:
- Tube Feeding A Child: The G-Tube That Saved My Son’s Life & My Sanity
- Tube Feeding at School: 8 Tips to Prepare Your Child and School Staff
- Feeding Tube Accessories: How to Improve Life with a Feeding Tube
- Introducing Our Pediatric Tube Feeding Guide
- Home Tube Feeding: Why You Need a Registered Dietitian
The local hospital ER put in a replacement feeding tube but the tube is only six inches long. the stomach contents keeps filling up and the syringe where I put in the liquid supplement keeps popping out and the liquid spills all over. I have been to the ER two times and it looks like he will need another type of feeding tube placed. I think this is cruel to put my son through this again. Any suggestions
I am trying to get to be a member of a feeding tube support group
I am a Dietitian in Wilmington North Carolina and I am wanting to start a feeding tube support group in my area. Any suggestions on how to get started? Anyone in the area interested in joining??
Just happened upon this, in googling Gtube support groups. I would definitely be interested in joining a group. I have a 2 1/2 month old on a mini and would love to meet others with similar situations.
To clarify…That is, support groups here in Wilmington NC.
Will do! Thanks, Amy!
I found “Real food blends”. A game changer for me. Peace
Hello! My 20 month old has failure to thrive and just had G button placed Friday. After two months in the hospital it’s time for home! I’m nervous and my parents are helping me while working. Are there any kid clubs to attend like others her age with tubes? Also they think she may have an underline condition but they don’t know what it is. It’s very frustrating. Any help and support would be great!! Thanks!!
Does any one knows if there is any protection cover for peg tube thanks
My husband had a G-Tube placed this August and has lost a considerable amount of weight is this common..also should i take him to a nutritionist? He is very discouaged about not being able to eat at this time is there any support groups for Adults with peg tubes
hello my name is Matthew Garcia and my daughter has a g tube I’m currently looking for training classes in my city of San Antonio and if anyone can help me much appreciated
Talk to me about adults with feeding tube and what supplements are needed with jevity 1.2. I have a swallowing problem and have had a tube for several months. 6 to 8 bottles a day is all I eat.
Our first year with a tube. Traditional Christmas will. It happen. Our children will b checking in technology wise during the day. We r looking for suggestions for other ways to do Christmas Day.
Anyone in the Houston,TX area have a Gtube? Looking for some local support. Thanks
My daughter has had a peg tube for 17 years. For the past 4 years it has had to be replaced every year. Prior to that time, her tube could last 3 to 3 1/2 years without deteriorating. What are the longer lasting tubes made of and how can I obtain one? I’ve talked to her pediatric GI (she is now an adult) but they didn’t have any information that was helpful about her tube other than size. Has anyone else experienced this, and did you find a solution?