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There are many ways you can help children and their families get the care they need.
We understand that you may have a lot of questions when your child is diagnosed with chronic kidney disease:
We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and options fully.
Chronic kidney disease refers to the kidney’s progressive inability to perform its functions, regardless of the cause. These functions include:
Your child’s stage of CKD is primarily determined by her glomerular filtration rate (GFR) – a measurement of how effectively her kidneys are filtering blood. According to the National Kidney Foundation, there are five stages of chronic kidney disease:
kidney damage with normal or increased GFR
diagnosis, measures to reduce risk of cardiovascular disease
kidney damage with mild decreased GFR
estimating progression of condition
moderate decreased GFR
evaluating and treating complications
severe increased GFR
preparation for dialysis or transplant
dialysis or transplant
Keep in mind that this chart is a guide, and every child may experience symptoms differently. Since chronic kidney disease is progressive, many who have it will eventually reach Stage 5, but there are things we can do to slow the progression and minimize complications.
CKD is common in the United States. In fact there are more people with CKD (around 29 million) than there are with diabetes. In children, however, it’s very rare.
Complications may develop such as:
Since these complications are largely treatable, it’s important that kidney disease be diagnosed as early as possible.
It’s a complicated question. Remember that CKD refers to a state in which the kidneys aren’t working properly. This could be due to a malformation, a build-up of scar tissue on the kidneys or other causes.
About half of all childhood cases of CKD are due to congenital (present at birth) abnormalities of the kidneys or bladder, such as:
For the other half of children with CKD, it may be caused by one or more acquired conditions. Many cases are linked to nephrotic syndrome, a collection of symptoms and signs centered around four major components:
Sometimes nephrotic syndrome is caused by a serious condition called focal segmental glomerulosclerosis (FSGS). FSGS causes scarring on the parts of the kidneys that filter the blood. It’s challenging to treat because:
FSGS and other conditions that cause scarring of the kidney tend to worsen over time because scar tissue causes the kidneys to have to work harder, which in turn causes more scar tissue to form.
Children’s researcher Elizabeth J. Brown, MD, has discovered a gene linked with FSGS. These discoveries are critical to determining what causes the disease, and how an effective treatment can be developed.
Other factors that may cause CKD include:
It’s important to note that the causes of CKD in adults tend to be different. Most often, adult CKD is caused by diabetes, hypertension and simply aging.
CKD is challenging to diagnose early because in its earliest stages, it often doesn’t cause visible symptoms. When symptoms do appear, they’re often non-specific, and don’t necessarily indicate a problem with your child’s kidneys. Some of these symptoms include:
Children usually aren’t in pain, unless they have an infection in the kidneys or another organ.
Q: What’s the long-term outlook for my child?
A: Unfortunately, at present, chronic kidney disease cannot be cured. The good news is twofold: we can often slow the progression, and we have two good ways of treating end-stage renal disease through dialysis and kidney transplant.
Q: When will my child need a transplant or dialysis?
A: It’s completely understandable to want to know what the future holds, but the truth is that it’s impossible to predict how quickly CKD will progress to end-stage renal disease. We know CKD will progress to end-stage renal disease, but it could take five days, five years or 50 years.
Q: Shouldn’t my child have a kidney transplant sooner rather than later?
A: This is a concern that many parents have, but since transplanted kidneys function for a limited number of years (around 20 years for a kidney from a living donor, and 10 for a kidney from a deceased donor), it’s best to not undergo a transplant until it becomes necessary.
Q: What resources are available to help pay for dialysis or a kidney transplant?
A: In 1972, Congress passed the End Stage Renal Disease Act, ensuring that Medicare will cover dialysis and kidney transplants for anyone with end-stage renal disease who is eligible for social security, including children.
After your child is diagnosed with chronic kidney disease, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.
Some of the questions you may want to ask include:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”