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.
For Kids and Parents
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.
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
Kids and Kidney Disease: Know the Risks
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
Kidney disease in children can be caused by:
- birth defects
- hereditary diseases
- nephrotic syndrome
- systemic diseases
- urine blockage or reflux
How Kidney Disease Affects Children
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.
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KIDNEYTALK SHOWS FOR PARENTS & KIDS
HEALTH LIBRARY ARTICLES FOR PARENTS & KIDS
This video is also available in Spanish
Resources for Parents of Children who have kidney disease
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.
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
“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!”
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 The Painted Turtle
Oregon/Northwest Kidney Youth & Family Camps
Georgia Camp Independence
Illinois Camp Duncan
Kansas/Missouri Camp ChiMer
Michigan NKFM Kids Camp
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