| Understanding Kidney Disease in Children
What kidney disease & transplant mean Kidney disease in children can be acute (sudden) or chronic (long-term) and may progress to kidney failure (ESKD), when the kidneys can no longer properly filter waste and fluid. Kidney failure = kidneys can’t filter waste or fluids properly At that stage: • Dialysis is used to help the kidneys do their work. • A kidney transplant is often the preferred long-term option for many children when possible. A kidney transplant replaces kidney function with a healthy donor kidney and can significantly improve growth, energy, and overall quality of life. Why transplant matters: A transplant replaces failed kidney function with a healthy donor kidney. Donors can be: • Living (parent/relative/friend) • Deceased donor Many children live longer and have a better quality of life after transplant vs dialysis How common is kidney disease in children? Kidney disease in children is relatively rare compared to adults, but it still affects thousands of children each year. • Chronic Kidney Disease (CKD): ~1 in 10,000 children • End-Stage Renal Disease (ESRD): ~1–2 children per million each year • Congenital kidney disorders (like malformations or polycystic kidney disease) are among the most common causes • Acute Kidney Injury (AKI) is more common and often reversible Causes of kidney disease in children Kidney disease can develop from several conditions, including: • Birth defects • Hereditary (genetic) diseases • Infections • Nephrotic syndrome • Systemic diseases affecting the whole body • Trauma • Urine blockage or reflux How kidney disease is diagnosed Diagnosis is based on medical history, family history, and physical exam, along with tests such as: • Urine tests – check filtering and protein levels • Blood tests – measure kidney function (GFR) and underlying disease • Kidney biopsy – checks for damage and identifies the cause • Genetic tests – identify inherited conditions Children may be referred to a pediatric nephrologist (a kidney specialist for children). What are the stages of CKD? The stages of chronic kidney disease (CKD) are mainly determined by the glomerular filtration rate (GFR), which measures how well the kidneys filter blood. According to the National Kidney Foundation, CKD is classified into five stages. This framework serves as a general guide, and each child may experience symptoms differently. Since CKD is a progressive condition, many children may eventually reach Stage 5. However, there are important steps that can be taken to slow disease progression and reduce complications over time.  What are the symptoms of CKD? Early kidney disease may have few or no clear symptoms. When symptoms appear, they may include: • Fatigue • Difficulty concentrating • Sleep problems or restless legs • Feeling generally unwell • Fever • Loss of appetite Pain is uncommon unless there is an infection. Risks & complications Chronic kidney disease can lead to complications such as: • High blood pressure • Anemia (low red blood cells) • Weak bones • Malnutrition • Growth delays • Nerve damage How kidney disease is treated When kidney failure occurs, care is managed by a medical team based on the child’s age, health, and cause of disease. Main treatment options include: • Dialysis • Kidney transplant • Supportive care Dialysis (when kidneys can’t function) Dialysis removes waste, salt, and extra fluid from the body. Hemodialysis • Blood is filtered through a machine • Done at a hospital or dialysis center • About 3–5 hours per session, ~3 times per week Peritoneal dialysis • Uses the lining of the abdomen to filter waste • Fluid is placed and drained through a catheter • Can be done manually during the day or overnight with a machine Kidney transplant (long-term treatment option) • Kidney transplant is often the most effective long-term treatment for children with ESKD. • A healthy kidney is placed from a living or deceased donor • Child must be medically stable before surgery • After transplant, anti-rejection medications are required for life • Regular follow-up is essential to monitor kidney function Kidney transplant is a treatment, not a cure. Supportive care, monitoring & daily management In addition to dialysis or transplant, supportive care is essential: Medications • Blood pressure control • ESAs for anemia (red blood cell support) • Phosphate binders (protect bones) • Vitamin D supplements Nutrition • Kidney-friendly (renal) diet: lower sodium, potassium, phosphorus • Fluid and protein adjustments as needed • Dietitian support is key Emotional support • Counseling and support groups • Child life specialists • Support for families and caregivers Ongoing monitoring • Regular check-ups for kidney function, growth, and blood pressure • Early detection of complications • Adjustments to treatment as needed Kidney disease care is long-term and team-based, but early diagnosis, monitoring, and treatment can help slow progression and improve quality of life. |
| Your Child’s Kidney Healthcare Team
Caring for a child with kidney disease requires a dedicated team of specialists working together to provide the best possible care. Understanding each team member’s role can help you navigate your child’s treatment and advocate effectively. Pediatric Nephrologist (Kidney Doctor) • Specializes in diagnosing and treating kidney diseases in children. • Manages treatment plans, medications, and dialysis if needed. • Oversees transplant evaluations and long-term kidney care. Primary Care Physician (Pediatrician or Family Doctor) • Monitors overall health, vaccinations, and common childhood illnesses. • Coordinates care with specialists and provides ongoing health support. Nephrology Nurse • Helps educate families about kidney disease, dialysis, and medications. • Assists with treatments and ensures follow-up care. Dialysis Team (For Children on Dialysis) • Includes specialized nurses and technicians who perform dialysis treatments. • Educates families on home dialysis options, if applicable. Renal Dietitian • Guides families on kidney-friendly nutrition, helping manage protein, sodium, potassium, and fluid intake. • Works with families to create meal plans that support kidney health. Social Worker • Provides emotional support and connects families to resources such as financial assistance, insurance guidance, and school accommodations. • Helps children and parents cope with the challenges of chronic illness. Pharmacist • Ensures medications are safe and effective for your child’s condition. • Educates families on proper dosages, potential side effects, and interactions. Psychologist or Mental Health Counselor • Supports the emotional well-being of children and families adjusting to a chronic illness. • Helps with anxiety, depression, and coping strategies. Child Life Specialist • Assists children in understanding their condition and treatments in an age-appropriate way. • Provides play therapy and emotional support in hospital settings. Additional Specialists Who May Be Involved (Ask about a care coordinator to streamline treatment plans.) Urologist • Specializes in conditions affecting the urinary tract and may be involved if structural issues impact kidney function. Endocrinologist • Helps manage hormone imbalances that can arise due to kidney disease, such as growth and bone health concerns. Cardiologist • Monitors heart health, as children with kidney disease may have high blood pressure or other cardiovascular risks. Occupational & Physical Therapists • Assist children who experience mobility challenges, fatigue, or developmental delays due to kidney disease. School Nurse & Special Education Staff • Work with families to implement 504 Plans or Individualized Education Programs (IEPs) to support learning and school participation. My Child's Team Worksheet: My Child's Team Worksheet *E My child’s care coordinators Worksheet: My Child's Care Coordinators Worksheet *E  How to Work Effectively with the Healthcare TeamBuilding a Strong Relationship with Your Child’s Medical Team •Keep Communication Open: Establish trust and maintain an open dialogue with doctors, nurses, and specialists. •Use a Care Coordinator (if available): Some hospitals provide care coordinators to help manage multiple specialists and streamline communication. •Stay in Touch: Don’t hesitate to follow up with emails or calls for urgent concerns or clarification. Be Prepared Organize Medical Information: • Keep a folder or digital record of your child’s medical history, medications, test results, and appointments. •Bring these to every visit for quick reference. Track Symptoms: •Maintain a symptom log, noting frequency and possible triggers. •This helps doctors understand how your child is feeling between visits. Prepare a List of Questions: •Write down and prioritize key concerns before each appointment. •Sample questions: •What does this diagnosis mean for my child’s future health? •What are the treatment options and their risks/benefits? •Are there any lifestyle changes we should consider? Be Clear and Concise Explain Symptoms and Concerns Clearly: •Describe changes in your child’s health in detail, including timelines Avoid Medical Jargon: •If you don’t understand something, ask for a simpler explanation. Recap and Confirm: •After the doctor explains something, summarize what you understood: “Just to make sure I understand, you’re saying we should monitor for these signs…” Ask the Right Questions Diagnosis and Treatment: •What are the potential outcomes of this treatment? •Are there alternative treatments or second opinions we should consider? •How will we know if the treatment is working? Testing and Results: •Why is this test necessary, and what will it tell us? •When and how will we receive the results? •What should we do while waiting for results? Follow-Up and Long-Term Care: •How often should we follow-up? •What symptoms should we watch for that require immediate attention? Preparing Your Child for Appointments •Explain in Age-Appropriate Language: Help your child understand what to expect. •Practice Questions Together: Encourage them to express how they feel. •Bring Comfort Items: A favorite toy, book, or music can help ease anxiety.  |
| Advocating for Your Child
As a parent, you play a vital role in your child’s healthcare journey. Your child has rights as a patient, and you, as their parent or guardian, also have rights and responsibilities regarding their care. Some of these rights include: •Participating in all decisions regarding your child's medical care and treatment. •Asking questions freely to ensure you fully understand diagnoses, procedures, and treatment options. •Requesting a second opinion or seeking care from another doctor or hospital if you feel it is necessary. •Requesting an interpreter if language is a barrier to communication. •Reviewing and accessing medical records to stay informed about your child’s health. It’s important to remember that advocating for your child also involves equipping them with the skills to advocate for themselves. Teaching self-advocacy early helps build their confidence and prepares them for future independence. Encouraging Self-Advocacy in Your Child Self-advocacy means knowing when and how to ask for help, understanding one’s rights, and effectively communicating needs. Children and teens who develop these skills early are better equipped to navigate school, healthcare, and personal challenges as they grow. Here are some strategies to encourage self-advocacy: •Teach them to ask questions. Encourage curiosity and ensure they know it’s okay to seek clarification from doctors, teachers, or other authority figures. •Role-play real-life scenarios. Practice conversations about speaking up in medical settings, at school, or in social situations. •Reinforce problem-solving skills. Help them break down challenges into manageable steps and explore possible solutions. •Encourage them to express feelings and concerns. Whether they are experiencing anxiety, frustration, or confusion, letting them know their voice matters builds confidence. Self-advocacy doesn’t mean handling everything alone it’s about teamwork. Children should know they can seek support from trusted adults, whether it’s a parent, teacher, doctor, or mentor. By fostering these skills, you empower your child to take an active role in their well-being, ensuring they have the tools to face challenges with confidence. Additional Advocacy Tips: •Know Your Rights: Understand medical consent, patient rights, and second opinion policies. •Bring a Support Person: A second caregiver or advocate can take notes and help process information. •Request Written Summaries: Ask for visit summaries or instructions in writing. •Keep a Medical Binder: Organize important medical records, test results, prescriptions, and care plans in one place. •Build a Support Network: Connect with other parents who have experience with similar conditions. •Speak Up When Something Feels Off: if something doesn’t feel right, ask for clarification or escalate concerns. .jpg "Resources(2)") •Pediatric Chronic Kidney Disease Risk (NKF) NKF Website *E •For Kids and Parents Renal Support Network Website *E •PKD Parents PKD Website *E/SP •What Every Parent Needs to Know - A Guide When Your Child Needs a Transplant (developed by the OPTN/UNOS Patient Affairs Committee) OPTN & UNOS *E •Helping your child adjust (UNOS) UNOS Website *E •Addressing children’s needs (UNOS) UNOS Website *E •Back To School: Problems Faced By Pediatric Kidney Patients and Their Caregivers AAKP Website *E •Oregon Family-to-Family Health Information Center F2F Website *E/SP |
