| Understanding Kidney Disease in Children
What is kidney disease? Kidney disease refers to a condition where the kidneys are damaged and cannot effectively filter blood. This impairment can cause a buildup of waste and fluids in the body, potentially leading to other health issues. Acute kidney injury (AKI) is marked by a sudden decline in kidney function, typically lasting a short period. Although AKI is often temporary, it can have lasting effects even after the initial cause has been addressed. If left untreated, AKI can pose significant health risks. In contrast, chronic kidney disease (CKD) develops gradually over a longer time frame, often spanning months to years. CKD can progressively lead to kidney failure, which may require a kidney transplant or dialysis for effective management. When kidney failure is managed through these methods, it is referred to as end-stage kidney disease (ESKD). How common is kidney disease in children? Kidney disease in children is relatively rare compared to adults, but it still impacts thousands of children each year. The prevalence of kidney disease varies based on its type and severity: • Chronic Kidney Disease (CKD) affects approximately 1 in 10,000 children. • End-Stage Renal Disease (ESRD), in which the kidneys fail and require dialysis or transplantation, occurs in about 1 to 2 children per million each year. • Congenital kidney disorders, such as kidney malformations or polycystic kidney disease, are among the most common causes of kidney disease in pediatric patients. • Acute Kidney Injury (AKI), characterized by a sudden loss of kidney function due to factors like infection, injury, or dehydration, is more common but is often reversible. What causes kidney disease in children? • birth defects • hereditary diseases • infection • nephrotic syndrome • systemic diseases • trauma • urine blockage or reflux How do healthcare professionals diagnose kidney disease in children? Healthcare professionals diagnose kidney disease in children by evaluating the child's medical and family history along with a physical examination. To confirm the diagnosis, they may perform one or more of the following tests: • Urine tests: These assess how well the kidneys are filtering blood and look for proteins in the urine. • Blood tests: These measure the glomerular filtration rate and search for any underlying diseases. • Kidney biopsy: This procedure checks for kidney damage and helps to determine the cause of the kidney disease. • Genetic tests: These look for specific gene mutations that could contribute to kidney disease. If the health care professional suspects that a child has kidney disease, they may refer the child to a pediatric nephrologist, who is a physician specializing in the treatment of kidney conditions in children. What are the stages of CKD? The stages of chronic kidney disease (CKD) are mainly determined by the glomerular filtration rate (GFR), which assesses how well the kidneys filter blood. According to the National Kidney Foundation, CKD is classified into five stages. It's important to remember that this chart serves as a guide, and each child may experience symptoms differently. Since chronic kidney disease is progressive, many individuals will eventually progress to Stage 5. However, there are steps we can take to slow the progression of the disease and reduce complications.  What are the symptoms of CKD? Chronic Kidney Disease (CKD) can be difficult to diagnose early because it often does not present clear symptoms in its initial stages. When symptoms do occur, they are usually non-specific and may not directly indicate a kidney issue in your child. Some common symptoms may include: •Fatigue •Difficulty concentrating •Trouble sleeping or experiencing restless leg syndrome •Generally feeling unwell •Fever •Loss of appetite Typically, children do not experience pain unless there is an infection in the kidneys or another organ. What risks are associated with chronic kidney disease (CKD)? Complications may develop, such as high blood pressure, anemia (low levels of red blood cells), weak bones, malnutrition, growth failure, and nerve damage. How do healthcare professionals treat kidney disease in children? When a child experiences kidney failure, healthcare professionals work together as a team to determine the best course of treatment, taking into account the child’s age, overall health, and the underlying cause of the kidney failure. There are two primary approaches for treating kidney failure in children: dialysis and kidney transplantation, along with supportive care. 1. Dialysis is a treatment that helps remove waste, excess fluid, and salt from the body when the kidneys can no longer perform these functions. There are two main types of dialysis used in children: •Hemodialysis - Involves using a machine to filter waste from the blood, and it is typically done in a hospital or dialysis center. -How it works: Blood is removed from the body through a needle inserted into a blood vessel, filtered through the dialysis machine, and then returned to the body. -Frequency: It is performed thrice a week and lasts about 3-5 hours per session. •Peritoneal Dialysis - Peritoneal dialysis uses the lining of the abdomen (the peritoneum) to filter waste and extra fluids. A catheter is placed in the abdomen, and a special fluid is introduced to absorb waste. -How it works: The fluid is drained and replaced several times a day, or it can be done overnight via a machine. -Frequency: There are two types: continuous ambulatory peritoneal dialysis (CAPD), done manually multiple times a day, and automated peritoneal dialysis (APD), which is done overnight using a machine. 2. Kidney Transplantation is the most effective treatment for children with end-stage kidney disease (ESKD). It involves surgically placing a healthy kidney from a donor (living or deceased) into the child's body. The child must be medically stable, and the transplant team will ensure that the child’s body is ready to handle the transplant surgery. •Living Donor vs. Deceased Donor: A kidney can come from a living donor (typically a parent or relative) or a deceased donor. •Post-Transplant Care: After transplantation, the child will need to take immunosuppressive medications to prevent the body from rejecting the new kidney. Regular follow-up care is necessary to monitor the function of the new kidney. 3. Supportive Care, in addition to dialysis and transplants, supportive care plays an important role in managing kidney failure in children. This may include: •Medications - Blood Pressure Management: Children with kidney failure often develop high blood pressure, so medications may be used to help control this. - Erythropoiesis-Stimulating Agents (ESAs): These medications help stimulate red blood cell production if the kidneys are unable to make enough erythropoietin, a hormone that helps produce red blood cells. - Phosphate Binders: To manage high levels of phosphate in the blood, which can be harmful to bones. - Vitamin D Supplements: To maintain bone health, kidney disease can affect calcium and phosphorus levels in the body. •Emotional and Psychological Support. Children and families may experience emotional stress due to the chronic nature of kidney disease and the intensive treatment regimen. Counseling, support groups, and child life specialists can help children cope with hospital visits, treatments, and the emotional challenges of kidney disease. •Dietary Modifications - Renal Diet: A kidney-friendly diet helps manage the workload on the kidneys. The diet often involves reducing sodium, potassium, and phosphorus intake, as well as limiting fluids and protein depending on the child’s condition. - Nutrition Support: Working with a renal dietitian ensures the child receives the proper nutrition, especially if they are on dialysis or have dietary restrictions. 4. Preventive Measures and Ongoing Monitoring. Once treatment is underway, children with kidney failure will require regular check-ups to monitor kidney function, blood pressure, growth, and development. These check-ups are essential to ensure the success of dialysis or transplantation and to address any complications early. |
| 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. .png "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 |
