Getting sick can sometimes seem like just another part of growing up. Children catch colds, scrape knees, and bounce back with surprising resilience. But when your child is frequently unwell or shows signs that something more serious is wrong, it’s natural to feel overwhelmed and concerned. One condition that can trigger this worry is chronic kidney disease.
Although it affects millions of children worldwide — an estimated 12.1 million annually — it’s still deeply distressing to see your child cope with such a serious condition. You might wonder: What does this mean for their future? How can I help them feel better now and stay healthy in the long term?
This guide is designed to help you understand kidney disease in children, recognize its stages and symptoms, explore treatment options, and learn how to support your child emotionally and physically. You’re not alone in this journey, and with knowledge and care, your child can continue to thrive.
What Is Chronic Kidney Disease?
The kidneys are two small, bean-shaped organs that play a vital role in your child’s health. They filter waste and excess fluids from the blood to produce urine while helping maintain a healthy balance of salts, minerals, and electrolytes. When the kidneys become damaged over time and lose their ability to function correctly, the condition is called chronic kidney disease, or CKD.
In children, CKD can lead to serious health problems, especially if not caught early. Unlike acute kidney problems, which can occur suddenly and may be reversible, chronic kidney disease is a gradual, long-term process that can progress to permanent kidney failure.
Causes of Chronic Kidney Disease in Children
Different conditions can cause or contribute to kidney disease in children. In many cases, the disease begins in early childhood or even before birth. Common causes include:
- Congenital abnormalities of the kidneys or urinary tract
- Hereditary diseases, such as polycystic kidney disease
- Glomerulonephritis, an inflammation of the kidney’s filtering units
- Urinary tract obstructions or reflux, which is the backward flow of urine
- Autoimmune diseases like lupus
- Interstitial nephritis, which affects the kidney’s tubules and surrounding tissue
- Infections that damage the kidneys
- Diabetes or high blood pressure, which is more common in older children and teens
- Medications or toxins that harm kidney tissue
- Chemotherapy, radiation, or specific cancer treatments
Knowing the underlying cause can help doctors tailor the treatment plan and better monitor disease progression.
Stages of Chronic Kidney Disease
Chronic kidney disease progresses through five stages, based on the kidney’s ability to filter waste, measured by the glomerular filtration rate (GFR). This is determined using blood tests that measure levels of creatinine, a waste product usually cleared by healthy kidneys.
Stage 1: Kidney Damage with Normal Function (GFR ≥ 90 mL/min)
Stage 1 has a normal GFR of greater than 90 ml/min. The kidneys are pretty good at filtering, even when they aren’t functioning at 100%. That’s why at this stage, there are often no symptoms of chronic kidney disease. Most people won’t know they have Stage 1 unless they’re being tested for diabetes or high blood pressure. Since most children don’t experience these issues, it’s likely you won’t know your child is experiencing CKD until a later stage.
Stage 2: Mild Loss of Function (GFR 60–89 mL/min)
Children experiencing Stage 2 will have a glomerular filtration rate of 60-89 ml/min. This indicates mild kidney disease, which is typically similar to Stage 1 in that it’s not noticeable and does not cause symptoms. As with the previous stage, testing for diabetes or high blood pressure is usually the only way CKD is discovered at this level.
Stage 3: Moderate Loss of Function (GFR 30–59 mL/min)
Stage 3 is broken up into two levels: 3A and 3B. Stage 3A has a decrease in GFR to 45-59 mL/min, and Stage 3B shows a reduction in GFR to 30-44 mL/min. At these stages, waste products can build up in the blood (uremia). This can also produce symptoms, such as:
- Fatigue
- Fluid retention, swelling (edema) of extremities, and shortness of breath
- Urination changes — such as foamy, dark orange, brown, tea-colored, or red if it contains blood, and urinating more or less than normal
- Kidney pain is felt in the back
- Sleep problems due to muscle cramps or restless legs
Stage 4: Severe Loss of Function (GFR 15–29 mL/min)
At Stage 4, kidney damage is considered advanced, characterized by a severe decrease in the glomerular filtration rate (GFR) to 15-30 mL/min. At this stage, your child may need dialysis or a kidney transplant shortly. In addition to uremia, your child is likely to develop complications of kidney disease, such as high blood pressure, anemia (a shortage of red blood cells), bone disease, heart disease, and other cardiovascular diseases. Common symptoms include:
- Stage 3 symptoms
- Nausea and/or vomiting
- Taste changes, such as a metallic taste in the mouth
- Bad breath due to a buildup in the blood
- Loss of appetite
- Difficulty concentrating
- Nerve problems, such as numbness or tingling in the toes or fingers
Stage 5: Kidney Failure or End-Stage Renal Disease (GFR < 15 mL/min)
The final stage has a glomerular filtration rate (GFR) of 15 ml/min or less. At this stage, your child will develop end-stage renal disease (ESRD), which means that their kidneys no longer function to meet the body’s needs. In this stage, the kidneys will no longer function effectively, and dialysis or a kidney transplant will be needed. Symptoms of Stage 5 CKD include:
- Loss of appetite
- Nausea or vomiting
- Headaches
- Fatigue
- Being unable to concentrate
- Itching
- Making little or no urine
- Swelling, especially around the eyes and ankles
- Muscle cramps
- Tingling in hands or feet
- Changes in skin color
- Increased skin pigmentation
General Signs and Symptoms of Kidney Disease in Children
Recognizing the signs of kidney disease in children can be tricky, especially in the early stages. Symptoms often mimic other illnesses or may be subtle. Pay close attention to the following:
- Swelling in the face, hands, legs, or feet
- Bedwetting, especially if your child had previously been dry at night
- Urinary tract infections that keep coming back
- Burning or pain during urination
- Blood in the urine or dark, tea-colored urine
- Persistent high blood pressure
- Decreased appetite and slowed growth
- Fatigue or difficulty concentrating
- Dry, itchy skin and muscle cramping
If your child consistently shows any of these symptoms, schedule an appointment with their pediatrician. Early detection is key to slowing the disease’s progression.
Diagnosing Chronic Kidney Disease
If kidney disease is suspected, your child’s healthcare provider will begin with a thorough medical and family history, a physical examination, and laboratory testing. Diagnostic steps may include:
- Blood tests to assess creatinine levels and estimate GFR
- Urinalysis to look for protein, blood, or infection
- Ultrasound or other imaging to evaluate kidney structure and detect abnormalities
- Kidney biopsy in some cases, to identify the exact cause of the damage
Once diagnosed, ongoing monitoring becomes essential to track the progression of kidney disease in children and adjust treatment as needed.
Treatment Options for Chronic Kidney Disease
The goal of treating chronic kidney disease in children is to slow disease progression, manage symptoms, and maintain a good quality of life. While CKD cannot always be reversed, it can often be managed effectively.
Medical Treatments
In addition to steps such as nutrition and diet changes, doctors will generally begin with initial treatment, including medications, diuretics, supplements, and hormonal therapies, including:
- Medications: Doctors may prescribe ACE inhibitors or ARBs to control blood pressure and reduce protein loss in the urine.
- Diuretics: These medications help the body eliminate excess fluid and reduce swelling.
- Iron supplements and erythropoietin are used to treat anemia that often accompanies CKD.
- Vitamin D and phosphate binders: Help manage bone health and mineral imbalances.
- Hormonal treatments: Used to support growth and development in children who experience delayed growth due to CKD.
Dialysis
When kidneys can no longer effectively filter waste, dialysis is necessary. This involves either:
- Hemodialysis, which uses a machine to filter the blood outside the body
- Peritoneal dialysis, which uses the lining of the abdomen to filter blood inside the body
Your nephrologist will help determine which method is most suitable for your child.
Kidney Transplant
For many children with end-stage kidney disease, a kidney transplant offers the best long-term outcome. Children generally do very well with transplants and can lead healthy, active lives post-surgery.
Caring for a Child with Chronic Kidney Disease
Parenting a child with a long-term illness like kidney disease can feel like an emotional roller coaster, but it is possible to take steps to improve quality of life and have an active childhood. Here are some practical ways to support children with chronic kidney disease.
Establish a Routine
Children thrive on routine. Even when medical appointments or treatments interrupt your regular schedule, try to maintain consistency with meals, homework, and bedtime.
Encourage Open Communication
Allow your child to express their fears, sadness, or frustrations. Age-appropriate conversations about their condition can reduce anxiety and help them feel empowered.
Foster Independence
Help your child participate in their care in age-appropriate ways, such as tracking fluid intake or remembering to take medications. This builds confidence and ownership.
Support Mental Health
Chronic illness can take an emotional toll. Be alert for signs of depression or anxiety, and consider therapy or support groups designed for children with chronic diseases.
Collaborate with Schools
Keep your child’s teachers informed. They may qualify for a 504 Plan or Individualized Education Program (IEP) to ensure accommodations and support are in place.
Benefits of Home Care for Children with Chronic Kidney Disease
For many families, pediatric home care can offer peace of mind and practical support. These services can be beneficial for managing kidney disease in children at home. Here’s how:
Personalized Care in a Familiar Environment
Nurses and specialists can administer medications, monitor vital signs, and even assist with dialysis in the comfort of your home. This reduces the need for hospital visits and keeps your child more comfortable.
Reduced Disruption to Daily Life
Home health care supports your family’s routine. Your child can stay in their bed, eat home-cooked meals, and avoid the stress of constant travel.
Emotional and Educational Support
Home health providers are also educators. They teach you and your child how to manage the condition, empowering you to respond to symptoms or emergencies with confidence.
Continuity of Care
With regular visits, home health professionals become familiar with your child’s unique needs and the dynamics of your family. This relationship fosters trust and helps ensure that care is consistent and tailored. It also provides valuable communication between your home team and your child’s nephrologist, making it easier to adjust treatments when needed.
Support for the Whole Family
Home health services don’t just care for the patient — they support the entire family. Many providers offer guidance for parents and siblings, helping them understand what the child is experiencing and how they can contribute to their well-being. This level of support can alleviate caregiver stress and enable your family to focus more on enjoying quality time together.
Helping Your Child Live a Full Life
A diagnosis of kidney disease in children can feel life-altering, but it doesn’t mean your child won’t have a happy, fulfilling life. With the proper medical care, emotional support, and resources, many children with CKD participate in school, sports, and family activities with only minor adjustments.
Here are a few ways to help your child thrive:
- Stay informed: The more you understand your child’s condition, the better you can advocate for them and make informed decisions. Ask questions during doctor visits and seek out trusted sources of information.
- Celebrate small wins: Progress with a chronic illness can be slow and subtle. Celebrate your child’s courage, good test results, or how they manage a difficult day. These moments build resilience.
- Promote healthy habits: Encourage a kidney-friendly diet, good sleep hygiene, and daily physical activity within your child’s capabilities. These habits benefit both physical health and emotional well-being.
- Connect with other families: Joining a support group or online community can help you and your child feel less isolated. Other families can offer perspective, encouragement, and practical advice.
Living with kidney disease in children is undeniably challenging. As a parent or caregiver, your heart is invested in every lab result, every symptom, and every decision. But it’s important to remember that you are not facing this journey alone. An entire community, including pediatric nephrologists, nurses, dietitians, therapists, and home health providers, all here to walk alongside you and your child.
You are your child’s strongest advocate and most significant source of comfort. Your love, presence, and determination are powerful tools in the fight against this disease.
Nurturing Children with Love and Support
Kidney disease in children is a serious condition, but it is also one that can be managed with the right approach. From early diagnosis to advanced treatments like dialysis or transplant, and emotional support to home health care, you have many tools at your disposal to help your child live fully and happily.
As a parent or caregiver, you are an essential part of your child’s care team. Your love, commitment, and vigilance make a profound difference. By staying informed, working closely with medical professionals, and providing steady support at home, you can help your child navigate this journey with strength and hope.
Remember, you’re not just managing an illness — you’re nurturing a life. And with support, your child can continue to grow, learn, play, and dream, just like any other child.
Schedule Your Child’s Care Assessment Today
At Care Options for Kids, we understand the unique challenges of caring for a child with severe health conditions. Our dedicated team of pediatric home health care nurses is here to support your family with compassionate, expert care tailored to your child’s needs. Contact us today to schedule an assessment and learn how we can help you navigate this journey with confidence and care.
Click here to start your journey to better care.