Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
Helpful Pediatric
Websites
Resource Categories
Click on the title to go to that particular set of resources.
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Videos for parents and kids: A listing of links to videos about a variety of topics surrounding transplant and easing medical appointment anxiety.
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Useful phone apps: Apps for your phone that can help you and your child with this transplant journey.
Downloads for children: Downloadable materials to help children understand the transplant process and organ donation.
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School-related websites: Links to sites to help with finding appropriate school accomodations and other school-related information for your child.
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Digestive disease websites: Links to websites and organizations about specific digestive diseases for support and education.
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Parent websites: Other helpful sites for parents, such as help for transition adolescence to adult care.
Videos for Parents and Kids
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1. "Taking Your Child's Temperature" By Nemours Healthcare.
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2. "Taking Care of Your Child's Gastrostomy Tube (G-Tube)" By Nemours Healthcare.
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3. "Changing a Ostomy Pouch" by American College of Surgeons.
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4. "Living with an Ostomy" Video showing the changing of an ostomy bag on an infant.
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5. "Making Medical Visits Easier for Kids" By Nemours Healthcare .
6. "Taking Care of Your Child's Teeth" By Nemours Healthcare.
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7. "Does my Child Need an Antibiotic?" By Nemours Healthcare.
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8. "Using Car Seats Safely" By Nemours Healthcare.
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9. "Tips for Safe Cleaning" By Nemours Healthcare.
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10. "7 Principles of Healthy Home" By Nemours Healthcare.
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Useful Phone Apps
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TransplantU App: Downloadable App on the app store on your iPhone. Created by Nebraska Transplant, tells a story of the transplant process for kids. Interactive, drag and drop features. The child can read the story or the story can be read to the child.
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Simply Sayin': Application for the iPhone created by Phoenix Children's Hospital. Provides a glossary of medical terms with kid-friendly definitions as well as some fun educational illustrations. A fabulous educational tool for young children navigating a complex medical world.
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Learn about and track your gastrointestinal symptoms. Has helpful videos within the app.
Phone app that helps you track your immunosuppression medications.
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Downloads for Children
The colorful book uses the true story of a chapter mother's double lung transplant, adapted and illustrated by her two children and those of other member families from TRIO.
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A Kids Guide to Intestinal Transplant: A guide created by Transplant Unwrapped to help inform kids about the basic steps of the intestinal transplant process.
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What Every Parent Needs to Know: A guide created by UNOS about organ transplantation.
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What Every Kid Needs to Know: A guide about the basics of transplant created by UNOS.
Helpful Websites for Pediatric Patients and their Parents
This is just a listing of websites that pertain specifically to the pediatric population. If you are looking for general transplant websites, digestive disease websites for adults, and/or financial resources please visit this page.
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School-Related Websites
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Managing Chronic Conditions in School
Purpose: Provides resources and suggestions for students with chronic conditions on school accommodations and management.
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IHPs, 504 Plans, and IEPs: What’s the Difference?
Purpose: Read about possible accommodations you can get for your child in school.
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Preparing for Post-Secondary Education
Purpose: Information for students with disabilities moving onto college.
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Purpose: Transplant Living by UNOS has compiled a listing of summer camps across the country that are medically oriented. Visit each individual site for more information.
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Purpose: Listing of possible transplant-related scholarship programs listed by UNOS Transplant Living.
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Digestive Disease-Specific Organizations and Websites for Pediatrics
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Purpose: Liver education and advocacy.
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American Society of Anesthesiologists (ASA)
Purpose: Education on pain management and surgical anesthesia.
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Purpose: To raise awareness about tube feeding and oral aversion therapy.
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Purpose: Furthering advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families.
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Purpose: Education on various gastrointestinal conditions for kids.
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International Foundation for Gastrointestinal Disorders
Purpose: Education and research for gastrointestinal disorders. Has specific information on motility disorders, gastroparesis, kids' GI disorders, and more.
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Necrotizing Enterocolitis Society
Purpose: Education, support, and advocacy for necrotizing enterocolitis, a leading cause of short bowel syndrome in pediatric patients.
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Purpose: Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.
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Short Bowel Syndrome Foundation
Purpose: Education and advocacy for individuals with short bowel syndrome.
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Short Bowel Syndrome Cure Project
Purpose: Research and advocacy for individuals suffering with short bowel syndrome and intestinal failure.
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United Ostomy Association of America (UOAA)
Purpose: Education and support for individuals living with ostomies. Online support community available.
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Helpful Websites for Parents
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Adolescent Health Transition Project
Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.
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Purpose: Avery’s Hope provides financial assistance to the rare, ultra rare and undiagnosed pediatric GI patient families facing out-of-pocket and insurance denied expenses. Most recently, Avery’s Hope has partnered with BasiCare Plus to offer a non-insurance program offering counseling, $0 copay on most prescriptions, telehealth and access to both an accountant and an attorney.
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Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.
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Purpose: Provides educational materials from the American Academy of Pediatrics for parents of children of all ages 0-18 years.
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Purpose: Provides educational materials about a wide variety of health conditions geared toward supporting parents. Also has a child and teen site with similar information in terms they can understand.
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