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Tube Feeding Support Groups and Resources

Amy Long Carrera, MS, RD, CNSC, CWCMS
Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist
07/01/13  7:24 PM PST

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:

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Comments

26 Comments

  1. ArleneGurwich
    Posted March 18, 2014 at 2:37 pm PDT

    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

  2. Amy Carrera, MS, RD, CNSC
    Posted March 18, 2014 at 9:54 pm PDT

    Hi Arlene,

    I’m so sorry to hear that! If you would like to call me at 800-382-4298, I am happy to discuss your son’s treatment plan.

    Thanks!
    Amy

    Amy Long Carrera MS, RD, CNSC, CWCMS| Corporate Registered Dietitian

  3. fran s.
    Posted July 16, 2014 at 8:08 pm PDT

    I am trying to get to be a member of a feeding tube support group

  4. Amy Carrera, MS, RD, CNSC
    Posted July 18, 2014 at 8:34 pm PDT

    Great idea! Please click on this link for some ideas:
    Tube Feeding Support Groups and Resources

  5. Andrea Shingledecker, RD
    Posted November 13, 2014 at 11:46 pm PST

    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??

  6. Amy Carrera, MS, RD, CNSC
    Posted November 14, 2014 at 5:52 pm PST

    Hi Andrea,

    That’s probably something that’s much-needed! You might contact a local GI or feeding clinic to see if they are interested in having you start this for their patients. You might also reach out to one of the resources posted in this article or post your idea in a tube feeding forum. Your group may grow from there!

    Good luck!

  7. Rebecca
    Posted December 19, 2014 at 5:56 pm PST

    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.

  8. Rebecca
    Posted December 19, 2014 at 6:27 pm PST

    To clarify…That is, support groups here in Wilmington NC.

  9. Amy Carrera, MS, RD, CNSC
    Posted December 22, 2014 at 11:43 pm PST

    Tube feeding organizations, such as the ones above, are a great place to start. The Feeding Tube Awareness Facebook page is the largest online support group for tube feeding in the world. Chances are, there is someone in your area with common issues!

  10. Rebecca
    Posted January 13, 2015 at 5:08 am PST

    Will do! Thanks, Amy!

  11. Bill
    Posted March 2, 2015 at 1:57 am PST

    I found “Real food blends”. A game changer for me. Peace

  12. Carla Baker
    Posted January 27, 2016 at 9:06 pm PST

    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!!

  13. Amy Carrera, MS, RD, CNSC
    Posted January 28, 2016 at 8:09 am PST

    Congratulations on bringing your little one home! For local support, you might start with Feeding Tube Awareness’s Facebook page to find other parents or groups in your area. You could also ask the clinic or hospital where your child is seen about local support groups. Good luck!

  14. ramesh k.
    Posted June 30, 2016 at 2:22 am PDT

    Does any one knows if there is any protection cover for peg tube thanks

  15. Amy Carrera, MS, RD, CNSC
    Posted August 15, 2016 at 4:14 pm PDT

    Thank you for your question! If you are talking about protection against the tube being pulled or catching on something, here is a resource on where to find protective belts and other items for feeding tubes: http://www.feedingtubeawareness.org/resources/useful-products/g-gj-tube-belts/. If what you need is a cover for the feeding port on the end of your tube because it broke, you might try a feeding port adaptor, such as this one: https://www.nestlehealthscience.us/brands/compat/enteral-tube-adapter. If that doesn’t answer your question, please let me know!

  16. Juanita Maclean
    Posted October 24, 2017 at 2:06 pm PDT

    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

  17. Amy Long Carrera, MS, RD, CNSC, CWCMS
    Posted October 25, 2017 at 1:48 pm PDT

    Hi Juanita, I’m sorry to hear your husband is having a hard time. He should definitely talk to his doctor about any weight loss. His doctor may refer him to a dietitian. He could also reach out to the supply company that provides his feeding supplies. They may have a dietitian that can evaluate his current feeding plan and recommend any changes to the doctor. As for support, there is an excellent resource called the Oley Foundation. They have an online community, regional conferences happening all over the U.S. and throughout the year. They also have tons of resources all over their website for adults and kids with feeding tubes. If you would like some additional tips on tube feeding or recommendations based on his current feeding plan, you can email me directly at rd@shieldhealthcare.com.

  18. Matthew Garcia
    Posted April 11, 2018 at 7:15 pm PDT

    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

  19. Amy Long Carrera, MS, RD, CNSC, CWCMS
    Posted April 12, 2018 at 9:05 am PDT

    Hi Matthew, I would check with your local children’s hospital. If they don’t have a class there, they may be able to point you toward another local resource. I will also check with our local office in San Antonio to see if they are aware of anything in the area. I’m happy to mail you a copy of our pediatric tube feeding guide if you’d like to email me directly at rd@shieldhealthcare.com. Thank you!

  20. John R. Boepple
    Posted August 8, 2018 at 5:53 pm PDT

    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.

  21. Amy Long Carrera, MS, RD, CNSC, CWCMS
    Posted August 10, 2018 at 8:40 am PDT

    Hi John, thanks for your question! If you’re referring to vitamins and minerals, you will meet 100% of the RDIs (reference daily intakes) for vitamins and minerals with 1000 ml of this formula. Looks like you get between 1422 and 1896 ml daily. Please let me know if you have any further questions!

  22. Bev
    Posted December 7, 2018 at 9:22 am PST

    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.

  23. Aimee Sharp
    Posted December 11, 2018 at 9:13 am PST

    Hi Bev. Thank you for your comment. We hope that so far the tube feeding has been going well. To answer your question, yes, you can still have a (nearly) traditional Christmas with a few changes. There are some great suggestions on this page from feeding tube site Mic-key. Just because food is often the focus of Christmas, doesn’t mean you can’t spend time together and enjoy the comforts of home during the holiday. We hope you find the article helpful and we wish you happy holidays! -Aimee, Shield HealthCare

  24. Ocean
    Posted September 16, 2019 at 8:40 pm PDT

    Anyone in the Houston,TX area have a Gtube? Looking for some local support. Thanks

  25. Sarah Sanchez
    Posted September 17, 2019 at 11:45 am PDT

    Hi, Ocean. Thank you for reaching out. A good way to know exactly what is available in your area is to check in with the medical office that manages your gtube. They generally know of support groups and have additional resources available to their patients. In addition, I have found some online support that you may find helpful. The Oley Foundation has this Home IV and tube feeding support and discussion group. Also, the Feeding Tube Awareness Foundation offers some excellent online resources here. I hope you find the support you are looking for and wish you the best. -Sarah, Shield HealthCare

  26. Deb
    Posted April 4, 2023 at 3:01 pm PDT

    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?

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