Renal Support Network

RSN’s For Kids & Parents page is a useful resource that aims to demystify childhood CKD by providing tips for parents caring for children with kidney disease. The health library articles and KidneyTalk™ shows presented here portray the successes and offer practical advice that can only come from actual parents who are raising children who have kidney disease and from adults who developed kidney disease at a young age and continue to thrive. 

Please contact us if you know of a resource we should include, if you would like a specific topic related to pediatric nephrology covered on this page or if you would like to share your experience and tips for parents of children with kidney disease.

The Painted Turtle Camp

The Painted Turtle Camp for kids who have a with serious medical conditions such as kidney disease is a great program, and we would love to see more people attend. This non-profit camp that operates year-round is a member of the SeriousFun Children’s Network, founded by Paul Newman. All campers and their families attend camp free of charge.

Kidneys for Kids Family Activity Book

Kidneys for Kids is a 60-page activity book that helps children understand kidney disease, dialysis, and transplant in an easy-to-understand engaging format. This book was written by Anyssa Dang to help her younger brother Kavan who was diagnosed with kidney disease and didn’t understand what was happening.

Watch RSN’s Hope Week Presentation Videos: Focus on Parents of Children Who Have Kidney Disease

Featured Videos:

Unlock your potential, Youth Workshop by Allison C. Dankner, M.ED, PSY. B.S

Motivational Speaker, RSN Founder and President Lori Hartwell

Top Medical Issues For Youth with Kidney Disease: Elaine Kamil, MD

Managing Your Life with Kidney Disease, Youth Patient Experience Panel by Isela King, Sarissa Velarde, Elizabeth Boggs, Jorge Caraveo and Abigail Christine Teasdale

Preparing Your Child To Transition to Adulthood: Maria Ferris, MD

10 things to help your child adjust to care: Helen Currier, CNN

We may tend to think that kidney disease only affects adults, but children are at risk for developing this condition as well.

Your child may also be at risk for kidney disease if he or she:

• is overweight
• has pain in the back, side, or lower belly
• complains of burning or pain when urinating
• has changes in the urine, or often wets themselves
• has unexplained fever
• has swelling in the feet, ankles, or legs
• wakes up with swollen eyelids
• becomes dehydrated often
• has a family member with kidney disease

• birth defects
• hereditary diseases
• infection
• nephrotic syndrome
• systemic diseases
• trauma
• urine blockage or reflux

Kidney disease can affect children in various ways, ranging from treatable disorders without long-term consequences to life-threatening conditions. Acute kidney disease develops suddenly, lasts a short time, and can be serious with long-lasting consequences or may go away completely once the underlying cause has been treated. Chronic kidney disease (CKD) does not go away with treatment and tends to get worse over time. CKD eventually leads to kidney failure, described as end-stage kidney disease or ESRD when treated with a kidney transplant or dialysis.

Children with CKD or kidney failure face many challenges, which can include

• a negative self-image
• relationship problems
• behavior problems
• learning problems
• trouble concentrating
• delayed language skills development
• delayed motor skills development

Children with CKD may grow at a slower rate than their peers, and urinary incontinence—the loss of bladder control, which results in the accidental loss of urine—is common.

Is your child is eligible for Medicare? Find out more and enroll.

Find out what dialysis expenses are covered by Medicare

Download the PDF from Health and Human Services

UNOS Transplant Living/Children

The Alport Syndrome Foundation website has helpful information and resources just for teenagers.

KidsHealth from Nemours is a website with helpful information, videos and activities for kids in English and Spanish. They cover many children’s health issues including pediatric kidney disease.

Books to help young people and their parents cope with kidney disease:

Chronically Happy: Joyful Living in Spite of Chronic Illness –
A book that teaches one how to cope and life a fulfilling, joyful life despite having chronic illness By Lori Hartwell, who was was diagnosed with kidney disease at age of 2.

Available in Paperback at Amazon.com and, digital or eReader via Renal Support Network

Howl Learns about Kidneys and Dialysis
In Book 3 of the Organ Donation Series, Howl Learns About Kidneys and Dialysis, Howl’s Grandpa Bob has a kidney disease and needs dialysis treatment to keep him alive until he can find a kidney donor. Follow along as Howl sees where Grandpa Bob goes for his dialysis treatment and learns what it does. Howl and his family also help Grandpa in his search for a kidney donor, and ultimately Grandpa Bob is saved by a donor hero.
Available at DonateLife.net and at howltheowl.com

“Maria Never Gives Up: Are You Brave Like Me?” A children’s book about coping with chronic illness By Mary Baliker, who was was diagnosed with kidney disease at age of 9. Available at Amazon.com

A series of children’s books by Simon and Anita Howell, designed to help children who have a family member who has kidney disease understand the illness and the treatments. Lucy and Jack are two fictional young children whose Daddy has End Stage Renal Failure. If you are supporting a child in this situation as a parent, family member or healthcare professional, you may find these books helpful.

Here are the titles and links to all six books:
H is for Haemodialysis Available at Amazon 

H is for Haemodialysis (with notes for Parents and Professionals) Available at Amazon

P is for Peritoneal Dialysis Available at Amazon

P is for Peritoneal Dialysis (With Notes for Parents and Professionals) Available at Amazon 

K is for Kidney Transplant Available at Amazon 

K is for Kidney Transplant (With Notes for Parents and Professionals) Available at Amazon

My Mom Is Having Surgery (A Kidney Story) by Brenda E. Cortez

“Kailey is worried and scared because her mom is about to have surgery. Come join Kailey in her journey where she finds out if surgery is safe, and how her mom gives a special gift of saving another mom’s life!”

Available at Amazon 

Activities for Kids and teens who have kidney disease:

RSN’s Renal Teen Prom is held once a year in Glendale, CA. It takes place on the Sunday before the Martin Luther King Jr holiday because there is no dialysis scheduled on that day and kids do not have to go to school the following Monday.
Learn more about RSN’s Renal Teen Prom

Camps & Retreats with a specific focus on and for young people who have kidney disease and their families:

Alabama Camp Bridges

California YMCA Teen Kidney Camp

California George Lopez Kidney Disease and Transplant Camp

California The Painted Turtle

Oregon/Northwest Kidney Youth & Family Camps

Georgia Camp Independence

Illinois Camp Duncan

Kansas/Missouri Camp ChiMer

Michigan NKFM Kids Camp

Pennsylvania DCI Western PA Kidney Kamp

Tennessee  DCI Camp Okawehna

Centers of Disease Control and Prevention
Statistics on children in the United States who have kidney disease

Web ID KIDS-1