Blog On Pediatric Kidney Patients
1. Introduction- My Story About How I Became Interested in Pediatric Kidney Patients
I became interested in Pediatric Kidney Disease or Kidney Disease Children after a visit to Riley's Children's Hospital Dialysis Center in Indianapolis, Indiana. I had a friend that had a child that was doing dialysis at Riley's. She invited me down to visit while her child was taking dialysis. At that time I was going down to IU Health for blood draws once a month as part of my post-transplant care.The buildings between IU Health and Riley's are connected. So in 2018, I visited the Dialysis Center at Riley's Children's Hospital.
I was shocked to see a very large room of infants and toddlers in cribs and playpens undergoing dialysis. Riley's is the only outpatient chronic hemodialysis unit in Indiana with an average of 30 children on dialysis at one time. Many patients and their patients travel several hours 3x/week for dialysis treatment. After my visit, I had to put my head between my knees for a while. I had no idea how prevalent kidney disease in children really was.
I later learned that nearly 10,000 children are on dialysis in the United States or have a Kidney Transplant to treat kidney failure.
According to the National Institute of Health, Black children had the highest incidence of of ESRD compared to White or Asain Children. In 2021, 57.3% of the children who started hemodialysis were black, while 40.5% were White and 20.2% were Hispanic. About one-third of the children receiving dialysis, do so in an adult center.
Because of my experiences, I have become much more involved with Children With Kidney Disease:
I did a Broadcast With Emily Whitacre on her son, Henry on November 28th, 2020.
https://youtu.be/79Ciz1E9A9Y?si=y3O81adBiHQ_0Xke
I stated several groups on FB dedicated to Children With Kidney Disease, including:
Pediatric Kidney Disease
https://www.facebook.com/share/g/1DRKZc9kMz/
Children With Kidney Disease
https://www.facebook.com/share/15xvnVEF9G/
Transplant Mom's 2021
https://www.facebook.com/share/g/1A2L27wDdk/
Children On Dialysis
https://www.facebook.com/share/g/1A376RsniK/
Children With Kidney Transplants
https://www.facebook.com/share/g/15yke81s1n/
Child Kidney Warriors
https://www.facebook.com/share/g/18VY1s9m12/
Children With Kidney Failure
https://www.facebook.com/share/g/15uM2z56mo/
Happy Mondaze + Support For Kidney Kids
https://www.facebook.com/share/g/15puPLyFwj/
Kidney Kids Reunion 2022
https://www.facebook.com/share/g/14ec3DgLCD/
I helped to initiate the PEDIATRIC KIDNEY PATIENTS INITIATIVE, KIDNEY PALS for the AAKP
https://aakp.org/center-for-patient-research-and-education/pediatric-kidney-pals/
I wrote an article, "Why I am a Pediatric Kidney Patient Advocate."
https://aakp.org/jim-myers-im-pediatric-kidney-patient-advocate/
Recently, I did a Broadcast on Pediatric Kidney Patients
https://www.youtube.com/live/_4ywsGolXQE?si=ut-nClutFzsKb6q1
2. Definition of Pediatric Kidney Disease
Pediatric Kidney Disease is defined as any kidney disease that affects children. It can be short-term or permanent damage to the kidneys.
There are two types:
Acute Kidney Injury, a sudden decrease in kidney function that can be reversed in some cases. AKI can be life-threatening if left untreated.
or
Chronic Kidney Disease (CKD), A gradual decline in kidney function over at least three months that can lead to permanent kidney failure.
3. Symptoms of Pediatric Kidney Disease
Symptoms of Pediatric Kidney Disease Would include:
Swelling: Edema, or swelling in the hands, feet, face, or legs
Urination: Changes in how often or how much a child urinates, including bedwetting at night
Urine color: Blood in the urine, which can appear pink or cola-colored, or protein in the urine,
which can make urine appear foamy
Pain: Pain or burning when urinating, or bone pain
Fatigue: Feeling tired or weak
Appetite: Loss of appetite or poor appetite
Weight: Weight loss or poor growth
Skin: Pale or sallow skin
Blood pressure: High blood pressure, which can cause headaches, chest pain, blurry vision, or nose bleeds
Fever: Repeated fevers
Other symptoms: Vomiting, nausea, irritability, stomach mass, hearing problems, and difficulty concentrating.
Some common causes of kidney disease in children include birth defects and family-inherited diseases.
Seek immediate medical care if your child has a fever and their symptoms worsen over time.
Other symptoms may include
decreased appetite
feeling tired
fever
high blood pressure
itchy skin
nausea or vomiting
shortness of breath
trouble concentrating
weakness
weight loss
stunted growth
Symptoms can vary from child to child, depending on the cause of the kidney disease.
4. Complications of Pediatric Kidney Disease
Complications of kidney disease in children may include:
Anemia;
Cardiovascular disease, or heart disease;
Electrolyte imbalances in the blood, especially potassium;
Growth problems, especially shorter-than-average height;
High blood pressure NIH external link, or hypertension;
Infection;
Metabolic acidosis;
Mineral and bone disorder
Cognitive issues;
Uninary incontinence;
Growth problems: Children with kidney disease may be shorter than average and experience delayed growth;
Anemia: Low levels of red blood cells;
High blood pressure: Also known as hypertension;
Bone disease: Weak bones that are more likely to break;
Electrolyte imbalances: Too much or too little potassium or phosphorus in the blood;
Infections: Urinary tract infections can injure the kidneys and lead to sepsis;
Cardiovascular disease: Heart disease and problems with blood vessels;
Cognitive issues: Decreased mental function, confusion, and dementia;
Poor nutrition: Malnutrition and protein in the urine;
Skin changes: Dryness and itching;
Nerve damage: Damage to nerves in the arms and legs;
Kidney disease occurs when the kidneys aren't filtering waste from the body properly. This can lead to a buildup of toxins and wastes in the blood.
Kidney disease can also affect children’s lives in other ways, causing problems related to behavior, relationships, and self-esteem. Children with CKD may have difficulty concentrating and learning, and may develop language and motor skills more slowly than their peers. Parents or guardians may want to learn more about ways to care for a child with kidney disease.
5. How Does Kidney Disease in Children Differ From Kidney Disease in Adults: Children are not Small Adults When it Comes to Renal Care
a. Children are not Small Adults, they have unique issues that need to be taken care of!
a1. Pediatric Kidney Disease differs from adult kidney disease primarily in the causes, with children more likely to have congenital anomalies of the kidney and urinary tract (CAKUT) as the leading cause, while adults often develop kidney disease due to Diabetes and HBP.
b. The impact of kidney disease on a child's growth and development requires unique management strategies compared to adults with kidney disease
c. Dialysis Considerations: Children may require different dialysis modalities depending on their age and size, with Peritoneal Dialysis sometimes being preferred on younger children
2b. Rare Diseases in Children
I. HUS: Hemolytic uremic syndrome (HUS) is a condition that can occur when small blood vessels become damaged and inflamed. This damage can cause clots to form in the vessels all through the body. The clots can damage the kidneys and other organs.
(HUS) is a rare but serious disease that affects the kidneys and blood clotting system. It's most common in children under five years old.
ii. Alport Syndrome: Alport syndrome is a rare genetic disorder that damages the kidneys' tiny blood vessels, causing progressive kidney function loss. It's named after South African doctor Arthur Cecil Alport and affects roughly 1 in 5,000–10,000 children. The condition is caused by genetic mutations in the COL4A3, COL4A4, and COL4A5 genes, which affect the formation of collagen IV, a protein found in the kidneys, ears, and eyes
III. Autosomal Recessive Polycystic Kidney Disease: Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder characterized by the development of numerous fluid-filled cysts in both kidneys, leading to progressive kidney dysfunction and potential liver complications. It is caused by mutations in the PKHD1 gene and is inherited in an autosomal recessive manner.
(ARPKD) is a rare genetic disorder that affects 1 in 20,000 children.
IV. Idiopathic Nephrotic Syndrome: drome (INS) is a kidney disease that occurs when the filtering units in the kidneys are damaged. It's the most common type of nephrotic syndrome in children.
V. Vasculitis: Vasculitis is a rare disease that causes inflammation of the blood vessels. It's an umbrella term for a group of conditions that can affect arteries, veins, and capillaries.
What causes vasculitis? The immune system mistakenly attacks healthy blood vessels. The cause is unknown.
VI. Others
a. Barter Syndrome: Bartter syndrome is a rare genetic kidney disorder that causes the body to lose too many minerals, particularly salt, in the urine. It's characterized by impaired salt reabsorption in the kidneys, leading to imbalances in electrolytes and fluids. Symptoms can appear before birth, during infancy, or in early childhood. Bartter syndrome disrupts the body's balance of potassium, sodium, chloride, and other molecules.
b. Gitelman Syndrome: Gitelman syndrome is a rare genetic disorder that causes an imbalance of electrolytes in the body, especially low levels of potassium, calcium, and magnesium. It is a kidney condition that causes a loss of sodium (salt) in the kidneys. The symptoms and severity of the disorder can vary greatly from one person to another and can range from mild to severe.
c. Nephrogenic diabetes Insipidus: (NDI) is a rare disorder that causes the body to produce too much urine, resulting in dehydration. It occurs when the kidneys don't respond to antidiuretic hormone (ADH), also known as vasopressin.
(NDI) is a disorder in which a defect in the small tubes (tubules) in the kidneys causes a person to pass a large amount of urine and lose too much water.
d. Liddle's Syndrome: Liddle's syndrome is a rare genetic disorder that causes high blood pressure (hypertension). It's also known as pseudohyperaldosteronism.
e. Renal Tubular Acidosis: Renal Tubular Acidosis (RTA) is a medical condition where the kidneys fail to properly remove acids from the blood, leading to an abnormally high level of acid in the bloodstream, also known as acidosis, due to a malfunction in the kidney tubules responsible for urine filtration; this can result in various complications including kidney stones and bone issues if left untreated.
f. Dents Disease: Dent disease is a rare, chronic kidney disorder that causes kidney stones, protein in the urine, and calcium deposits in the kidneys. It's caused by a mutation in the CLCN5 or OCRL1 genes on the X chromosome. It is a renal tubular disorder characterized by manifestations of proximal tubule dysfunction, including low-molecular-weight proteinuria, hypercalciuria, nephrolithiasis, nephrocalcinosis, and progressive renal failure.
6. What Causes Kidney Disease in Children?
Kidney disease in children can have many causes, including birth defects, infections, and genetic diseases.
Birth defects
• Congenital abnormalities: These include kidney or bladder malformations, such as obstructions or reflux
• Dysplastic kidneys: These kidneys are not formed properly and can't function normally
Infections
• Kidney infections: These can cause kidney disease
• Hemolytic uremic syndrome (HUS): This rare condition is often caused by an E. coli infection and can lead to kidney failure
Genetic diseases
• Cystinosis: This rare genetic condition causes a buildup of cystine in cells
Other causes
• Trauma or injury: Physical trauma to the kidneys can cause kidney disease
• Urinary tract blockages: Blockages in the urinary tract can prevent blood from reaching the kidneys
• Medications: Some medications can cause kidney problems
• Systemic diseases: Other diseases that affect the body can also cause kidney disease in children
Acute kidney injury (AKI)
AKI is when the kidneys suddenly stop working. This can be caused by infections, blood flow disruption, surgery, or exposure to toxic substances.
7. How Common is Kidney Disease in Children?
Kidney disease in children is relatively uncommon, affecting 15–75 cases per million children. However, it can have serious consequences, including kidney failure and cardiovascular disease.
Causes
• Congenital anomalies: The most common cause of kidney disease in children is a birth defect, such as posterior urethral valves.
• Urinary tract infections: Frequent urinary tract infections (UTIs) can lead to kidney disease.
• Family diseases: Some diseases, like polycystic kidney disease, run in families.
• Hemolytic uremic syndrome (HUS): A rare disease caused by damaged red blood cells blocking the kidneys' filters. E. coli bacteria is the most common cause of HUS.
• Lupus: Systemic lupus erythematosus (lupus) is a common cause of kidney disease in teenagers.
•
Risk factors
• Sex
Male children are more likely to develop kidney disease than female children.
• Race
Black children in North America are more likely to develop kidney disease than white children.
Complications
• End-stage renal disease (ESRD) can develop as CKD progresses.
• Other complications include cardiovascular disease, mineral bone disorder, and poor nutrition.
8. How Do HC Professionals Diagnose Kidney Disease in Children?
Kidney disease in children is diagnosed through a physical exam, medical history, and a series of tests.
Physical exam
• A doctor will examine the child for signs of kidney disease
Medical history
• A doctor will ask about the child's health history and symptoms
Tests
• Blood tests: Check kidney function, blood cell counts, and electrolyte levels
• Urine tests: Check for protein and blood in the urine
• Imaging tests: Use sound waves or X-rays to create images of the kidneys and urinary tract
• Ultrasound: A painless test that uses sound waves to create images of the kidneys
• CT scan: Uses X-rays to create 3D images of the kidneys and bladder
• X-ray: Can show kidney stones and other physical characteristics of the kidneys
• Kidney biopsy: A small sample of kidney tissue is removed and examined under a microscope
• Genetic tests: Look for specific gene mutations
•
A doctor may refer a child with suspected kidney disease to a pediatric nephrologist, a doctor who specializes in kidney disease in children.
9. How Do HC Professionals Treat Kidney Disease in Children?
Kidney disease in children is treated with a combination of medications, diet changes, and sometimes dialysis or a kidney transplant. The treatment depends on the type, severity, and cause of the kidney disease, as well as the child's tolerance for different therapies.
Medications
• Antibiotics: Treat infections that may be causing kidney damage
• Diuretics: Increase urine output to help the kidneys get rid of excess fluids
• Antihypertensives: Control blood pressure by relaxing blood vessels
• Growth, bone density, and anemia medications: Help with growth, prevent bone density loss, and treat anemia
Diet changes
• Choose fruits and vegetables that are lower in potassium
• Balance protein intake
• Encourage liquids to help the kidneys keep working
• Limit liquids when kidney disease is more advanced
Dialysis
• A machine filters waste and extra fluids from the blood
• May be needed for a short time for acute kidney injury, or for chronic kidney disease in late stages
Kidney transplant
• A healthy kidney from a living or deceased donor replaces one of the child's kidneys
• Children who receive a kidney transplant can live full, normal lives
Other treatments
• Surgery to correct a blockage in the urinary tract
• Vaccines to help prevent infections
10. How Do HC Professionals Treat Complications of Kidney Disease in Children?
Complications of kidney disease in children can be treated with medications, dialysis, surgery, and dietary changes. The treatment plan depends on the child's age, the stage of the disease, and the child's symptoms.
Medications
• Blood pressure medications: ACE inhibitors and ARBs reduce blood pressure and protein loss
• Diuretics: Remove excess fluid from the blood to reduce swelling and lower blood pressure
• Anemia treatments: Erythropoietin and iron supplements help the body produce more red blood cells
• Bone health treatments: Phosphate binders and active vitamin D help improve bone development and growth
• Antibiotics: Fight infections
• Growth hormone therapy: Injections of man-made growth hormone help children reach a normal height
Dialysis
• A procedure that filters waste from the blood
• Dialysis can be done in a hospital or dialysis center
SURGERY
• A kidney transplant replaces a diseased kidney with a healthy one from a living or deceased donor
• Surgery may also be needed to correct birth defects or urinary tract obstructions
Dietary changes
• A licensed dietitian can help determine the best nutrition for your child
11. How Do HC Professionals Treat Kidney Failure in Children?
Treatment for kidney failure in pediatric patients primarily involves managing the underlying cause, dietary modifications, medications, and in severe cases, dialysis or a kidney transplant, with the latter often considered the best long-term option for children with end-stage renal disease (ESRD) to improve their quality of life; this may include preemptive transplantation before needing dialysis in some situations.
Key aspects of treatment:
• Medications:
Depending on the cause and severity of kidney failure, medications may include:
• Antihypertensive drugs: To manage high blood pressure
• Diuretics: To increase urine output
• Erythropoietin: To treat anemia
• Phosphate binders: To control phosphorus levels in the blood
• Calcium supplements: To maintain proper bone health
• Dietary modifications:
A specialized diet tailored to the child's needs may be necessary, focusing on:
• Fluid restriction: Depending on the level of kidney function
• Protein restriction: To manage waste product buildup
• Sodium and potassium control: To manage electrolyte imbalances
• Phosphorous restriction: To prevent bone complications
• Dialysis:
When kidney function is severely impaired, dialysis is used to filter waste products from the blood, serving as a temporary measure until a transplant can be performed.
• Hemodialysis: Blood is filtered through a machine outside the body
• Peritoneal dialysis: A solution is instilled into the abdominal cavity to filter waste
• Kidney Transplant:
Considered the optimal treatment for most children with end-stage kidney disease, where a healthy kidney from a donor is transplanted into the child.
Important considerations:
• Early diagnosis and intervention:
Early detection of kidney disease in children is crucial to manage the condition effectively.
• Multidisciplinary approach:
A team of specialists including nephrologists, pediatric surgeons, dietitians, and social workers may be involved in managing a child with kidney failure.
• Growth monitoring:
Children with kidney disease may experience growth delays, requiring close monitoring and potential interventions like growth hormone therapy.
• Psychological support:
Addressing the emotional and social impact of kidney disease on the child and their family is important.
12. Can Kidney Disease in Children Be Prevented?
Researchers have not found a way to prevent childhood kidney disease. But getting treatment early and managing the complications can help delay or prevent your child's kidney disease from getting worse.
There is no way to prevent all types of kidney disease in children, but there are things you can do to help reduce the risk.
Genetic diseases
• Some kidney diseases are genetic and can't be prevented. Examples include Alport syndrome, polycystic kidney disease, and nephropathic cystinosis.
• Treatments can help manage these diseases and protect your child's kidneys.
Lifestyle habits
• Teach your child healthy habits like eating well, getting enough exercise, and drinking enough water.
• Help your child manage stress through activities like meditation, yoga, or tai chi.
• Make sure your child takes their medications as prescribed.
• Get regular checkups for your child.
Other factors
• Antenatal immunization and diagnosis can help prevent kidney disease in children.
• Postnatal screening for proteinuria, hypertension, and dyslipidemia can help prevent kidney disease.
• Preventing obesity can help prevent kidney disease.
Early treatment and management can help delay or prevent kidney disease from getting worse.
13 Mental Health Issues Due to Stress & Low Self-Esteem
Pediatric kidney patients often experience significant mental health issues like depression, anxiety, and low self-esteem due to the stress of managing their chronic condition, including frequent medical procedures, limitations in daily activities, physical appearance changes, and the potential burden they feel on their families, leading to a decreased sense of control and self-worth.
Key mental health concerns in pediatric kidney patients:
• Depression:
This is the most prevalent mental health issue in children with chronic kidney disease (CKD), often stemming from feelings of isolation, loss of independence, and body image concerns due to dialysis treatments or other medical interventions.
• Anxiety:
Children with CKD may experience significant anxiety related to medical procedures, potential complications, and the uncertainty surrounding their health.
• Low self-esteem:
The physical limitations and dependence on medical treatments can lead to feelings of inadequacy and a negative self-image, particularly in adolescents.
• Social isolation:
Missing school or social activities due to medical appointments can lead to feelings of isolation and difficulty maintaining friendships.
• Body image issues:
Changes in appearance, such as growth restrictions or visible medical devices, can contribute to negative body image perceptions.
Factors contributing to mental health challenges in pediatric kidney patients:
• Chronic illness burden:
The ongoing nature of CKD requires constant monitoring, medication adherence, and dietary restrictions, which can be stressful for children.
• Medical procedures:
Frequent dialysis treatments, surgeries, and biopsies can be physically and emotionally taxing.
• Parental stress:
Parents of children with CKD may experience significant stress and worry, which can impact their child's emotional well-being.
• Developmental challenges:
The stress of managing a chronic illness can interfere with normal developmental milestones and social interactions.
How to support mental health in pediatric kidney patients:
• Early screening and intervention:
Regularly assess children with CKD for mental health concerns and provide timely access to mental health professionals.
• Psychotherapy:
Cognitive behavioral therapy (CBT) can be particularly effective in addressing negative thoughts and behaviors associated with CKD.
• Family therapy:
Involving the family in therapy sessions can help address communication issues and provide support for caregivers.
• Peer support groups:
Connecting children with other children facing similar challenges can foster a sense of belonging and understanding.
• Education and awareness:
Educating children and their families about CKD and its potential impact on mental health can help manage expectations and reduce stress.
• Collaboration between medical and mental health teams:
A coordinated approach between nephrologists and mental health professionals is crucial for providing comprehensive care to pediatric kidney patients.
14. What can I do to keep my Children's Kidneys Healthy?
To keep your children's kidneys healthy, focus on promoting a balanced diet with plenty of fruits and vegetables, ensuring they drink enough water to stay hydrated, encouraging regular physical activity, limiting salt intake, avoiding excessive sugar, and making sure they take medications as prescribed by their doctor, while monitoring for any potential side effects; consult your child's healthcare provider for specific guidance based on their individual needs.
Key points to remember:
• Hydration:
Encourage your child to drink plenty of water throughout the day to prevent dehydration, which can strain the kidneys.
• Diet:
• Fruits and vegetables: Include a variety of fresh fruits and vegetables in their diet, as they are rich in nutrients that support kidney health.
• Limit salt: Reduce the amount of added salt in their meals to minimize pressure on the kidneys.
• Moderate protein: Ensure a balanced protein intake, avoiding excessive amounts which can put stress on the kidneys.
• Sugar control: Limit sugary drinks and snacks to prevent blood sugar spikes that can impact kidney function.
• Exercise:
Regular physical activity helps maintain healthy blood pressure and overall kidney function.
• Medications:
Always follow your doctor's instructions regarding medications and inform them about any potential side effects.
• Regular checkups:
Schedule regular checkups with your child's doctor to monitor kidney health and catch any potential issues early.
Important considerations:
• Be mindful of family history: If you or other family members have a history of kidney disease, discuss additional preventive measures with your child's doctor.
• Avoid smoking: Discourage smoking as it can significantly harm kidney health.
• Monitor for symptoms: Pay attention to potential signs of kidney problems like frequent urination, swelling in the hands or feet, blood in the urine, and fatigue.
15. Clinical Trials for Children With Kidney Disease
Clinical trials for children with kidney disease are studies that evaluate new ways to prevent, detect, or treat kidney disease. These trials can help improve quality of life for children with kidney disease.
Clinical trials for children with kidney disease
• Chronic Kidney Disease in Children (CKiD) Study
This ongoing study involves children with mild to moderate kidney disease. The study includes physical exams, blood and urine tests, and cognitive development tests. The study's goals include identifying risk factors for kidney function decline and how kidney function decline affects cardiovascular disease, growth failure, and neurocognitive function.
• Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)
This three-year study evaluates blood pressure management and urine protein in children with chronic kidney disease.
• Ferric Citrate and Chronic Kidney Disease in Children
This 12-month study assesses the effects of ferric citrate therapy on changes in intact FGF23 levels in children ages 6-18.
Organizations that conduct clinical trials for children with kidney disease
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Conducts and supports clinical trials for kidney diseases
• Children's Hospital of Philadelphia (CHOP): Conducts clinical trials for kidney diseases, including the CKiD study and the PRESERVE study
• Johns Hopkins Children's Center: Conducts research on clinical care and outcomes for children with chronic kidney disease
Some clinical trials may pay for meals, travel, and housing.
16. The Transition From Pediatric Kidney Disease to Adult Kidney Disease
The transition from pediatric kidney disease to adult kidney disease refers to the process of transferring a young patient with chronic kidney disease (CKD) from a pediatric nephrologist to an adult nephrologist, usually occurring around the age of 18, and involves a comprehensive plan to educate the patient on self-management, build independence in their healthcare decisions, and ensure smooth continuity of care as they mature into adulthood; this transition is crucial as it can be a complex process due to the developmental changes occurring during adolescence and the need for increased responsibility in managing one's health.
Key aspects of the transition process:
• Early planning:
Ideally, the transition process should begin well before reaching adulthood, allowing time for gradual education and preparation.
• Multidisciplinary team:
A team including pediatric and adult nephrologists, social workers, nurses, and transition coordinators should collaborate to address the patient's medical, psychological, and social needs.
• Patient education:
Thorough education on their specific kidney disease, medication management, dietary restrictions, potential complications, and self-monitoring techniques is vital.
• Developmentally appropriate approach:
The transition process should consider the patient's maturity level and ability to take on increasing responsibility for their health.
• Joint clinic visits:
Meetings with both pediatric and adult nephrologists can facilitate a smooth handoff and address any concerns.
• Assessment of readiness:
Evaluating the patient's understanding of their condition, ability to adhere to treatment plans, and coping mechanisms is important before fully transitioning to adult care.
Challenges in transition:
• Psychological impact:
Adolescence can be a challenging time, and the added responsibility of managing a chronic illness can lead to anxiety, depression, or feelings of isolation.
• Lack of knowledge:
Some young adults may not fully understand their condition or the implications of their treatment options.
• Discontinuity in care:
Transitioning to a new healthcare provider and system can lead to gaps in care if proper coordination is not established.
• Insurance complexities:
Navigating changes in insurance coverage can be difficult for young adults transitioning to adult healthcare.
Overall, successful transition from pediatric to adult kidney care requires a coordinated effort between healthcare providers, patients, and families to ensure that young adults with kidney disease receive optimal care and are equipped to manage their health independently as they move into adulthood.
17. Conclusions
Pediatric Kidney Patients deserve a vibrant childhood: the joy of playing with friends, the ability to participate in and benefit from education, and the opportunity to build self-esteem and then achieve aspirations. As it stands currently, the reality of living with advanced pediatric kidney disease prevents too many children with CKD from realizing these ideals. Hopefully this will continue to change in the future.
ENDNOTES
INTRODUCTION
1. Riley 's Children's Hospital
https://www.rileychildrens.org/contact-and-locations/riley-hospital-for-children-at-iu-health
2. Indiana University School of Medicine, Clinical Care, Pediatric Nephrology
https://medicine.iu.edu/pediatrics/specialties/nephrology
3. Indiana University School of Medicine, Pediatric Nephrology
https://medicine.iu.edu/pediatrics/specialties/nephrology
4. Riley 's Children's Health, Pediatric Nephrology & Kidney Diseases
https://www.rileychildrens.org/departments/nephrology-kidney-diseases
5. ESRD among Children and Adolescents
https://usrds-adr.niddk.nih.gov/2020/end-stage-renal-disease/7-%20esrd-among-children-and-adolescents
WHAT IS PEDIATRIC KIDNEY DISEASE?
6. Kidney Disease in Children
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7. Pediatric Kidney Disease
https://www.childrensnational.org/get-care/health-library/kidney-disease
8. Pediatric Kidney Disease
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HOW DOES KIDNEY DISEASE IN CHILDREN DIFFER FROM KIDNEY DISEASE IN ADULTS: CHILDREN ARE NOT SMALL ADULTS WHEN IT COMES TO RENAL CARE
21. Congenital Anomalies of the Kidneys and Urinary Tract | Children's Hospital of Philadelphia https://search.app/9fWNmFbFK19DjV3m6
22. Congenital anomalies of kidney and urinary tract: MedlinePlus Genetics https://search.app/mgYTMuPuDSjC8f8aA
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25.Hemolytic uremic syndrome (HUS)
https://www.dshs.texas.gov/sites/default/files/IDCU/investigation/electronic/EAIDG/Hemolytic-Uremic-Syndrome-post-diarrheal.pdf#:~:text=HUS%20is%20less%20common%20in%20persons%20with,with%20HUS%2C%20but%20correlation%20to%20HUS%20in
26. Hemolytic Uremic Syndrome in Children - NIDDK https://search.app/4sgBZUtHKKNDTSkF8
27. Hemolytic Uremic Syndrome (HUS) – Epidemiology https://www.vdh.virginia.gov/epidemiology/epidemiology-fact-sheets/hemolytic-uremic-syndrome-hus/
28. Signs of Hemolytic Uremic Syndrome | E. coli infection | CDC https://search.app/ktK2jDi249ADizZC9
29. Alport Syndrome: Causes, Symptoms & Treatment https://search.app/qx17CgambV3ggRHA9
30. Alport Syndrome | National Kidney Foundation https://www.kidney.org/kidney-topics/alport-syndrome
31. Autosomal Recessive Polycystic Kidney Disease - NIDDK https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/autosomal-recessive-pkd
32. What is ARPKD? | PKD Foundation https://search.app/dBCwiBuiwM9tavWx5
33. Treatment of idiopathic nephrotic syndrome in children - UpToDate https://search.app/oGPezypYULd3Wopo9
34. [Idiopathic nephrotic syndrome] - PubMed https://search.app/xGaA9ukPxUQBoPnT7
35. Vasculitis - Symptoms and causes - Mayo Clinic https://search.app/tUE3dvKF6GtCstr97
36.Vasculitis: Symptoms, Types & Treatment https://search.app/ueTpLkiVuhuscRgN7
37. Bartter Syndrome - StatPearls - NCBI Bookshelf https://search.app/cmBD8kqRPK2perju9
38. Entry - #607364 - BARTTER SYNDROME, TYPE 3; BARTS3 - OMIM https://search.app/tmzExoULWzWzo4M18
39. Gitelman Syndrome: What It Is, Causes, Treatment | Osmosis https://search.app/uCYxMP5QyEDivLxh6
40. Gitelman's syndrome revisited: an evaluation of symptoms and health-related quality of life - PubMed https://pubmed.ncbi.nlm.nih.gov/11168953/
41. Broadcast With Stephanie Lynn Moiser
https://www.youtube.com/live/nsgT2DyMXdA?si=e40-0qvEw3ywOk-7
42. Nephrogenic Diabetes Insipidus - Symptoms, Causes, Treatment | NORD https://search.app/DAFjeZQj4bwcMTKS7
43. Pathophysiology, diagnosis and management of nephrogenic diabetes insipidus - PubMed https://search.app/SZiKT4FVt977agP26
44. Liddle’s syndrome mechanisms, diagnosis and management - PMC https://search.app/StcfUAS4QhBgQG3Y7
45. Entry - #177200 - LIDDLE SYNDROME 1; LIDLS1 - OMIM https://search.app/JxXT4WnA5D5YczHd9
46. Renal Tubular Acidosis - NIDDK https://www.niddk.nih.gov/health-information/kidney-disease/renal-tubular-acidosis
47. Renal Tubular Acidosis (RTA) - Kidney and Urinary Tract Disorders - Merck Manual Consumer Version https://search.app/F1FY1f6cGYpRwCyN7
48. Dent Disease - Symptoms, Causes, Treatment09
WHAT CAUSES KIDNEY DISEASE IN CHILDREN?
49. Kidney Disease in Children - NIDDK https://search.app/Wt8MBEZCPuJH44jt7
50. Causes of kidney disease in children https://search.app/Uob6a9472XT9PtKm7
51. Kidney Disease in Children | Cedars-Sinai https://search.app/4bdBYEw39LcLzZsE6
52. Chronic Kidney Disease (for Parents) | Nemours KidsHealth https://search.app/2vNWjP4wPyESd9258
53. Causes of Pediatric Kidney Disease - Dialysis Patient Citizens Education Center https://search.app/ZTgxtk5wLkoGSM1D7
54. Chronic Kidney (Renal) Disease | Boston Children's Hospital https://search.app/2urNBzP4YDVpsywH9
55. https://youtu.be/vxr8hSoPQoM?si=IA5H3PeGVZGdab-3
56. Cystinosis: Symptoms, Treatment & Outlook https://search.app/aDkQrYVT9CWWCE2U6
57. Types of Congenital Kidney & Urinary Tract Problems | NYU Langone Health https://nyulangone.org/conditions/congenital-kidney-urinary-tract-problems/types
58. Urinary Tract Congenital Malformations | Nephrology in New Jersey https://search.app/Gq3m6waegtX1XyQt9
59. Multicystic Dysplastic Kidney | Texas Children's https://search.app/sndYQ54gaG1paHA17
60. Dysplastic Kidneys | Children's Hospital Colorado https://search.app/93RmzC6ySUeLhxcD8
INFECTIONS
61. Kidney infection - Symptoms and causes - Mayo Clinic https://search.app/di8e1kgoKxcudUNL8
62. Kidney Infection (Pyelonephritis): Symptoms & Treatment https://search.app/d6G5WhrGPBUPaVnq7
63. Hemolytic Uremic Syndrome (HUS) – Epidemiology https://www.vdh.virginia.gov/epidemiology/epidemiology-fact-sheets/hemolytic-uremic-syndrome-hus/
64. Hemolytic uremic syndrome (HUS) - Symptoms and causes - Mayo Clinic https://search.app/bvghF6V2z8uBFtSG7
65. Haemolytic uraemic syndrome - Better Health Channel https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/haemolytic-uraemic-syndrome
GENETIC DISEASES
66. Cystinosis: Symptoms, Treatment & Outlook https://search.app/XZsm15wqSNAZsBDk7
67. Cystinosis - Symptoms, Causes, Treatment | NORD https://search.app/ge7KQR3evFjfgZja7
68. Nephropathic Cystinosis | National Kidney Foundation https://search.app/bUFbiy41VHJPJq9RA
OTHER CAUSES
TRAUMA OR INJURY
69. Kidney Disease in Children - NIDDK https://search.app/34zb7UteSKjWS3TQ7
70. Trauma in pediatric urology - ScienceDirect https://www.sciencedirect.com/science/article/pii/S1055858621000731
71. Kidney Injury in Children | Diagnosis & Treatment https://search.app/8BNSKwFXipc9pCzq8
URINARY TRACT BLOCKAGES
72. Kidney Disease in Children - NIDDK https://search.app/smXQCrijGqsh4zSC6
73. Renal Failure in Children | Children's Hospital of Philadelphia https://www.chop.edu/conditions-diseases/renal-failure-children
74. Ureteropelvic Junction Obstruction | Boston Children's Hospital https://search.app/1RPC1612LvPG135h7
75. Ureteral obstruction - Symptoms and causes - Mayo Clinic https://search.app/bLzGxxCgcAW4ot7C8
MEDICATIONS
76. Nephrotoxicity as a cause of acute kidney injury in children - PMC https://search.app/gVpjP4xMLVdrtVBB9
77. Drug-induced acute kidney injury in children - PMC https://search.app/HuxQH38n3Ffe4yG18
78. Medicines That Can Cause Acute Kidney Injury https://search.app/rUtzy3QFT7yBeMag8
SYSTEMIC DISEASES
79. Causes of kidney disease in children https://search.app/PdNaSE9GVVmm9phQ8
80. Renal manifestations of systemic diseases - PubMed https://search.app/z4PhJvmTu8Gw7UnV9
81. Pediatric Kidney Disease Treatment Detroit, MI | Children's Hospital of Michigan https://search.app/JdXh6MUb2SsehHG18
82. Causes of Pediatric Kidney Disease - Dialysis Patient Citizens Education Center https://search.app/QBrcwKEmnFoJkTTr8
83. Disease-Associated Systemic Complications in Childhood Nephrotic Syndrome: A Systematic Review - PMC https://pmc.ncbi.nlm.nih.gov/articles/PMC8887965/
ACUTE KIDNEY INJURY (AKI)
84. Acute Kidney Injury - Symptoms, causes, treatment | National Kidney Foundation https://www.kidney.org/kidney-topics/acute-kidney-injury-aki#:~:text=Acute%20kidney%20injury%20(AKI)%20is,still%20see%20or%20hear%20occasionally.
85. Acute kidney injury - Symptoms and causes - Mayo Clinic https://search.app/anJPJCfVLzVyD7YN6
86. Acute kidney injury in children: Clinical features, etiology, evaluation, and diagnosis - UpToDate https://search.app/uPo79Z8gPqwMDBDv6
87. https://youtu.be/yT9RCcMvlIo?si=vabWkQ5tNyxRxcCL
88. Acute Kidney Injury (AKI) | Children's Hospital of Philadelphia https://search.app/nZQr47Z6UKBUWVDu5
HOW COMMON IS KIDNEY DISEASE IN CHILDREN?
89. Kidney Disease in Children - NIDDK https://search.app/V9zmxTvEWFFMw9tN6
90. Causes of kidney disease in children https://search.app/5HhBqiD7BCjyd6vZ7
91. Chronic Kidney Disease (CKD) in Children - HealthyChildren.org https://search.app/AyeVxdXaGt6fvcZF7
92. Epidemiology of Chronic Kidney Disease in Children: A Report from Lithuania - PMC https://search.app/h7pUoaBKZhuLgTne9
93. Risk Factors for the Progression of Chronic Kidney Disease in Children https://www.chikd.org/journal/view.php?number=739#:~:text=Chronic%20kidney%20disease%20(CKD)%20is,manifest%20complications%20related%20with%20CKD.
DIAGNOSIS OF KIDNEY DISEASE IN CHILDREN
94. Diagnosis of Pediatric Kidney Disease - Dialysis Patient Citizens Education Center https://search.app/G8mzE9hLjy4DrRKA6
95. Diagnosing Chronic Kidney Disease in Children | NYU Langone Health https://search.app/ZwwpzfM3kb115oSD7
96. Kidney Problems in Childhood (for Parents) | Nemours KidsHealth https://search.app/d6Gg1PrRKn6po12H7
TREATMENT OF PEDIATRIC KIDNEY DISEASE
97. Pediatric Kidney Disease - Conditions and Treatments | Children's National Hospital https://search.app/6x2cg18vgq1mKqxg8
98. Kidney Disease in Children
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99. Kidney Failure in Children | Children's Hospital Colorado https://search.app/4v7mgQHdfHavpyis7
100. Renal Failure in Children | Children's Hospital of Philadelphia https://www.chop.edu/conditions-diseases/renal-failure-children#:~:text=In%20some%20cases%2C%20children%20may,Kidney%20transplantation
101. Medication for Chronic Kidney Disease in Children | NYU Langone Health https://search.app/CyJxzhHkCuiAZwTL8
102. Chronic Kidney Disease: Caring for Your Child (for Parents) | Nemours KidsHealth https://search.app/4CSA32dRuF2rMXZ58
103. Nutrition for Children with Chronic Kidney Disease - NIDDK https://search.app/td4gMg6igoZp3WH39
104. Chronic Kidney Disease (Pediatric) | CS Mott Children's Hospital | Michigan Medicine https://www.mottchildren.org/conditions-treatments/ped-kidney-disease
TREATMENT OF COMPLICATIONS OF KIDNEY DISEASE IN CHILDREN
105. Kidney Disease in Children - NIDDK https://www.niddk.nih.gov/health-information/kidney-disease/children
106. urmc.rochester.edu/encyclopedia/content?ContentTypeID=90&ContentID=P03111#:~:text=Treatment of chronic kidney disease,a healthy one (kidney transplant) https://search.app/1ByvHot4AbCyet316
107. Complications of kidney disease in children - American Kidney Fund (AKF) https://search.app/iQJgYceNhecCWps8A
108. Pediatric Kidney Disease - Conditions and Treatments | Children's National Hospital https://search.app/aZAw2AfAUeCBJkuB6
107. Kidney Disease in Children | Pediatric Nephrology | Duke Health https://search.app/JrT4ms9UxwZF4YdK9
108. Medication for Chronic Kidney Disease in Children | NYU Langone Health https://search.app/xjPeJbVBTCv85y1N7
TREATMENT OF KIDNEY FAILURE IN PEDIATRIC KIDNEY PATIENTS
109. Kidney Disease in Children - NIDDK https://search.app/3yxsjmxkw5Lczkpr6
110. Pediatric Kidney Disease - Conditions and Treatments | Children's National Hospital https://search.app/HxjVrsvqYA8T6iJF8
111. Renal Failure in Children | Children's Hospital of Philadelphia https://search.app/T1pNWHxbpMFrZfzi6
112. Kidney Failure in Children | Children's Hospital Colorado https://search.app/G8yFYNSUpn5d5ZgQ6
113. Growth Failure in Children with Chronic Kidney Disease - NIDDK https://search.app/fYN18HUJuEi45iCm9
114. Kidney disease in children | American Kidney Fund https://search.app/StnbJZBoV9umdaTd9
115. Medication for Chronic Kidney Disease in Children | NYU Langone Health https://search.app/NLVnRwQBdiqe5Z2m9
116. Chronic Kidney Disease in Children Treatment & Management: Approach Considerations, Anemia Management, Management of Bone Disease https://emedicine.medscape.com/article/984358-treatment
CAN KIDNEY DISEASE IN CHILDREN BE PREVENTED?
117. Kidney Disease in Children - NIDDK https://search.app/syuRSrwRrqWkZ6LZ8
118. Better Kidney Health for Kids: Seven Golden Rules | National Kidney Foundation https://search.app/Dmgypj1UEgL2tndNA
GENETIC DISEASES
119. Causes of kidney disease in children https://search.app/WN4k6qEdH9JpRqGFA
LIFESTYLE HABITS
120. Better Kidney Health for Kids: Seven Golden Rules | National Kidney Foundation https://search.app/GHq41vbSJVdYNjJn6
121.https://youtu.be/EWqS9uWGM0c?si=bDZ8Rg61uRX30rPm
OTHER FACTORS
BEING OVERWEIGHT
122. Indian Journal of Nephrology https://search.app/iwfw4ELfY6Uh7jBx8
OVERUSE OF CERTAIN PAIN MEDICATIONS
123. Better Kidney Health for Kids: Seven Golden Rules | National Kidney Foundation https://search.app/2JxfLzTaCS1sJXAy9
MENTAL HEALTH ISSUES DUE TO STRESS & LOW SELF-ESTEEM
124. Helping Your Child Adapt to Life with Chronic Kidney Disease - NIDDK https://search.app/Ddq4McQMUxNxaFiS7
125. Psychological aspects in children and parents of children with chronic kidney disease and their families - PMC https://search.app/GEQGauusToFtDQKZ7
126. Depression in Children and Adolescents with Chronic Kidney Disease—Review of Available Literature - PMC https://search.app/A4Uf4AYY53Hda3NA6
127. Depression in Children and Adolescents with Chronic Kidney Disease—Review of Available Literature https://search.app/adZQGPFBvg9zSmKd8
128. The Burden of Mental Health Conditions in Children With CKD - PMC https://search.app/KpKuY5NRmWGN5SeP6
129. Neuropsychiatric Disorders in Chronic Kidney Disease - PMC https://search.app/R5mYR74VqiS9hAyA7
130. Mental Health and Kidney Disease – Children’s Health https://search.app/2QGD1NjfAFEgS84B8
131. Depression and psychosocial burden among caregivers of children with chronic kidney disease | Middle East Current Psychiatry | Full Text https://search.app/X2sbbmBSugdhaCAk9
WHAT CAN I DO TO KEEP MY CHILDREN'S KIDNEYS HEALTHY?
132. Kidney Disease in Children - NIDDK https://search.app/GHro96fpVXjr7vru6
133. Better Kidney Health for Kids: Seven Golden Rules | National Kidney Foundation https://search.app/KwEApWSJJYtstz3H9
134. Four things parents can do to keep their kids’ kidneys healthy https://search.app/hQumS7P9pEr1AXsg6
135. 8 Kidney Health Tips for Kids of All Ages | Connecticut Children's https://search.app/75pZB4uMbS6NPScY7
136. Nutrition for Children with Chronic Kidney Disease - NIDDK https://search.app/DqHXpTuAK8FZo8Np8
137. Chronic Kidney Disease: Caring for Your Child (for Parents) | Nemours KidsHealth https://search.app/6hyy6GWuHn7wPeu76
138. Helping Your Child Adapt to Life with Chronic Kidney Disease - NIDDK https://search.app/WjdVHhmrmh5qrq3V8
139. Diet is key for kids with kidney conditions | Children's Hospital of Richmond at VCU https://search.app/vuVE5vgJqjwoNWUB7
140. https://search.app/V94yxJK7sqnqAA146
141.Avoid the superfood trap: Tips to improve your creatinine and eGFR | American Kidney Fund https://search.app/hyN8yMdr7ww3xvbU7
142. 6 Ways to Keep Your Kidneys Healthy | RUSH https://search.app/x31VP9xUjewG1b1F7
143. Ways to Keep Your Kidneys Healthy https://search.app/T4t76JZ19ZRb5t2P8
144. Diabetes and Kidney Disease: What to Eat? | Diabetes | CDC https://search.app/o2DVKM7Tb5NH7CXcA
CLINICAL TRIALS FOR CHILDREN WITH KIDNEY DISEASE
145. Clinical Trials for Kidney Stones in Children - NIDDK https://search.app/s2941ay56DCzsbET9
146. Pediatric Nephrology Research at Johns Hopkins Children's Center https://search.app/kNkVJxkjLvxXs7S59
147. Chronic Kidney Disease in Children Study | CHOP Research Institute https://search.app/G8mf2jjroAC4bC2P9
148. Chronic Kidney Disease in Children Study: CKiD - NIDDK https://search.app/AadG9HByo2WAKxUv5
149. New Study Seeks to Preserve Kidney Function in Children with CKD | Children's Hospital of Philadelphia https://search.app/bLQuFJ1s1Wd4jfjW7
THE TRANSITION FROM PEDIATRIC KIDNEY DISEASE TO ADULT KIDNEY DISEASE
150. Transition From Pediatric to Adult Nephrology Care: Program Report of a Single-Center Experience - PMC https://search.app/YQUmAcKvfGDT2nNA9
151. The Transition of a Pediatric Kidney Transplant Recipient from Childhood to Adult Care - PMC https://search.app/3UQJzDvfYxBAhCuw7
152. Multidisciplinarity in Transition Pathways for Patients With Kidney Disease: The Current State of Play - PMC https://search.app/yo9uFD1zUxhz4Gk46
153. Development of a transition program for pediatric patients with renal disease - ScienceDirect https://search.app/YV8m5JgcgpWhLkbi6
154. Transition of Chronic Pediatric Nephrological Patients to Adult Care Excluding Patients on Renal Replacement Therapy with Literature Review - PMC https://search.app/UNFJEagUwnhuKWSAA
155. Resource use and costs of transitioning from pediatric to adult care for patients with chronic kidney disease - PMC https://search.app/gdNVjkvEpkhZhkrC6
156. Transition of Chronic Pediatric Nephrological Patients to Adult Care Excluding Patients on Renal Replacement Therapy with Literature Review - PMC https://search.app/mxsQAneRfpMxrv8k6
157. Frontiers | Multidisciplinarity in Transition Pathways for Patients With Kidney Disease: The Current State of Play https://search.app/Hxpr1pQmEKAuVwYu6
158. https://search.app/SsHUr3vptJjfvj9x6
159. Pediatric to Adult Transition: Identifying Important Comorbidities and Considerations for Adult and Pediatric Nephrology Health Care Teams - Advances in Chronic Kidney Disease https://search.app/GxqfnYQHKA4qbFPLA
160. Resource use and costs of transitioning from pediatric to adult care for patients with chronic kidney disease | Pediatric Nephrology https://search.app/tepzW2ztAqUCzzsLA
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