For Kids and Parents

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. 

Kids and Kidney Disease: Know the Risks

Did you know that some diseases and conditions, like high blood pressure and diabetes, put children at risk for kidney disease? 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 his or her pants
  • 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
  • infection
  • nephrotic syndrome
  • systemic diseases
  • trauma
  • 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 blood-filtering treatments called 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.

KIDNEYTALK SHOWS FOR PARENTS & KIDS

Transitioning Pediatric Patients - Kidney Talk

Transitioning Pediatric Patients to an Adult Facility

Being a teenager and dealing with dialysis presents one set of challenges. Transitioning to an adult facility brings different challenges for patients and their...

HEALTH LIBRARY ARTICLES FOR PARENTS & KIDS

Videos About Kidneys for Kids and Teens

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.

Resources for Parents of Children who have kidney disease

Visit RSN’s National Resources page. Kidney Resources for Children

Is your child is eligible for Medicare? Check the Medicare.gov page for Children & End-Stage Renal Disease (ESRD) to find out more and enroll.

Visit the NephCure Kidney International Just for Kids page.

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

CHRONICALLY HAPPY by Lori Hartwell

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

Are you Brave Like Me - chilcrens book -chronic illness - Maru Baliker

“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

Meet Lucy and Jack-kidney disease explained to kids

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

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:

prom for kids with kidney disease - 18th Annual Renal Teen Prom - Renal Teen Prom - Renal Support Network

RENAL TEEN PROM

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

Oregon/Northwest Kidney Youth & Family Camps

Georgia Camp Independence

Kansas/Missouri Camp ChiMer

Michigan NKFM Kids Camp

Pennsylvania DCI Western PA Kidney Kamp

Tennessee  DCI Camp Okawehna