Your Teenager and Chronic Kidney Disease

As a parent, you watch your teenager go through exciting and confusing times - from their involvement in school activities and getting their driver’s license, to choosing which college he or she wants to attend and dealing with loads of peer pressure. You never expect that kidney disease will happen to your child. So when your teenager learns he or she has chronic kidney disease (CKD), it can become an unexpected challenge in your family.

First things first: how do kidneys work?

Kidneys are responsible for removing waste and extra fluid from what you eat and drink from in the body. The nutrients you need remain in your body while the extra waste is filtered by the kidneys. Kidneys are made up of millions of tiny filters called nephrons which remove the unwanted fluids from the blood by creating urine. The urine travels down the ureters into the bladder and is stored until it is released through the urethra.

How do teenagers get kidney disease?

The two most frequent causes for adults to develop chronic kidney disease are high blood pressure and diabetes. In teens these causes are uncommon. However, due to unhealthy eating habits leading to excessive weight gain, more young people are prone to diseases such as diabetes and high blood pressure, which can cause kidney disease later in life.

For most teens, CKD is caused by congenital disorders or diseases that develop such as:

  • Urinary problems, such as UTIs (urinary tract infection)
  • Reflux nephropathy
  • Nephrotic syndrome
  • Nephritis

Urinary tract infection (UTI)

The urinary tract consists of the urethra, the bladder, the ureters and the kidneys. Urinary tract infection (UTI) is caused when bacteria moves up into the bladder and multiplies. A bladder infection, or cystitis, is the most common UTI. Urinary tract infections are usually easy to diagnose in teens and adults.

Symptoms include:

  • frequent, painful urination
  • inability to urinate despite the urge
  • urine that appears cloudy or has an unusual smell
  • blood in the urine
  • fever and flank or lower back pain if the kidneys are infected

To diagnose a UTI, a urine sample is taken to check for the growth of bacteria. If the teenager is given antibiotics, relief usually begins within 12 to 24 hours of treatment. If the UTI affects the kidneys, intravenous medications may be necessary, requiring teens to be hospitalized.

After treatment, the doctor will collect another urine sample to determine if the medicine has gotten rid of the infection. Since UTIs tend to come back again, the doctor may want your teen to be tested on a regular basis.

Advice to prevent the recurrence of UTIs include:

  • After voiding, girls and women should wipe from front to back to prevent contaminating the urethra with bacteria from the anal area.
  • Drinking plenty of water to flush the urinary tract
  • Not resiting the urge to urinate
  • Taking a shower instead of a bath

Reflux nephropathy

Reflux disorder is often diagnosed after a teenager has a UTI. It occurs when urine goes back up from the bladder to the kidney. This is due to a defect of the “valves” between the ureters and the bladder. Reflux can cause an infection to spread to the kidneys. This can be serious and may lead to kidney damage. About 30% of older children with UTIs will suffer from reflux disorder.

Sometimes surgery is done to correct reflux disorder, but most teens are treated with antibiotics. Teens diagnosed with reflux disorder usually recover after treatment. Typically, they do not have relapses. If kidney damage occurs, however, teens may get high blood pressure later in life. If one kidney is damaged, the risk of getting high blood pressure is 10%. If both kidneys have been injured, the risk rises to 20%. Most teenagers who experience reflux disorders do well and do not experience kidney damage.

Nephrotic syndrome

Nephrotic syndrome usually occurs in children aged 6 months to 5 years old, although it can happen at any age. Boys are two times more likely to suffer from nephrotic syndrome than girls. Nephrotic syndrome occurs when the kidneys are diseased and unable to keep protein from leaking into the urine. It often appears for the first time after a child has had a cold or infection.

The cause of nephrotic syndrome is unknown. Many researchers are working to determine its cause and develop treatments. Today, nephrotic syndrome is typically treated with the medicine prednisone, and most young people improve with its use. Sometimes doctors prescribe immunosuppressive medicines. Whichever medicine your doctor chooses, your child will be monitored closely and get periodic blood tests.

Although there is no cure for nephrotic syndrome, most young children do well with treatment, and many “outgrow” the disease by the time they reach their teens. Even when a child has frequent episodes, if he responds well to treatment then permanent kidney damage is not likely.

Nephritis

Nephritis is when the kidney becomes inflamed, sometimes due to infection or a disease in the immune system called systemic lupus erythematosus (SLE). When the kidneys become irritated, they pass protein and red blood cells into the urine, causing it to have a color which resembles cola.

Teenagers who get nephritis are treated and most get better over time. Medical treatment depends on the symptoms, and includes reducing the swelling, inflammation and lowering blood pressure. 

Warning signs of kidney disease or UTI

Consult your doctor if your teenager exhibits any of the following:

  • Unexplained low-grade fever
  • Swelling around the eyes, feet, and ankles
  • Lower back pain
  • High blood pressure
  • Persistent abdominal pain
  • Frequent severe headaches
  • Unpleasant-smelling urine
  • Urine that is cloudy, bloody or dark brown
  • Burning sensation when urinating
  • Poor appetite
  • Slow growth or weight gain
  • Weak urinary stream, dribbling or fanning of urine stream
  • Painful urination
  • Weakness, excessive tiredness or loss of energy
  • Pale skin or “washed out” appearance

When teenagers go on dialysis

Dialysis cleans the blood and removes extra fluid when kidneys are no longer able to do this job. Treatment is done by using a special fluid called dialysate. Dialysate, a mixture of pure water and chemicals, is carefully controlled to pull wastes out of the blood without removing substances the body needs. Dialysis techniques have improved over the years and there are now more options on how teens with CKD can receive dialysis.

Peritoneal dialysis (PD), home hemodialysis (HHD), in-center hemodialysis and in-center nocturnal dialysis treatments can be discussed with your teen’s physician. The doctor will work with your teen to choose the dialysis modality that is best. A choice in modality is dependent on your teen’s health and lifestyle needs, as well as how your family feels about the treatment requirements.

Teenagers and kidney transplant

Many teenagers who need dialysis may be candidates for a renal (kidney) transplant. Kidney transplant is an option that provides a more “normal” life for your teen, because he or she will not need to spend time on dialysis. A kidney can come from a living donor — usually a healthy family member or close friend — or someone who has recently passed away, but it must be a match to your teenager’s body to prevent organ rejection. Immunosuppressant medication will be prescribed so that the new kidney is not rejected.

Lifestyle issues for teens on dialysis

You may be wondering how your teenager’s lifestyle will change after learning they have kidney disease. For many teens, leading a relatively normal life is what occurs.

Talk to their doctor about whether or not they can continue to play their favorite sport. Strength training of some type could be an option, for this builds stronger bones and stimulates muscles and nerves. Overall, consider exercise overall as a great way for your teenager to lead a healthy lifestyle.

With the Internet so highly available, there are resources there for your teen to reach out to other teenagers with kidney disease. Many times acceptance into particular groups is what teenagers value most — a sense of belonging. Perhaps ask your teenager’s health care team about summer camps in your area dedicated to teenagers with kidney disease.

Growth rates for teenagers with chronic kidney disease tend to be slower than for teenagers without the disease. It usually depends at what age your teenager was diagnosed; some of those who got the disease earlier will find they are smaller than other kids their age.

Weight fluctuation is another change your teen may experience when on dialysis. Fluid loss and water retention can also contribute to weight changes in your teen.

Sexual change may move slowly for teens with kidney disease, especially those on dialysis. Teenaged girls can experience irregular periods or go without getting one at all. You may want to talk to your teen’s doctor if their sexual development has been affected.

Emotions change a lot, too. Teenagers already go through the usual hormonal changes. And when chronic kidney disease is added, stress, anger, fear and other emotions can arise. Talk to your teenager about their disease. If you, your teenager or anyone else within your household are upset, consider addressing such issues. Talk to your child’s health care team, especially the doctor and social worker, about how to approach open communication with your teenager.

The good news for teenagers

The outlook for young people with kidney disease has improved greatly in the past few decades, in both quality of life and long-term outcomes. Dialysis techniques have improved and more dialysis options are available. Pediatric kidney transplants have seen positive evolvement, too. Early diagnosis of kidney disease decreases life-threatening complications, boost healthy development and may delay the disease’s progression.

Teenagers can still maintain a normal life by being treated as a teenager first and a teenager with chronic kidney disease second. The transition from “normal” life to life with kidney disease may be tough. That is why it is important to maintain open lines of communication between you, your teen and your teen’s health care team.

Your teenager’s schedule may change when it comes to treating their chronic kidney disease. But trips to the mall, going to the Friday night football game and attending school dances don’t have to be hindered by the disease. With the help of early detection, working with your teen’s doctor and treating the disease, your teen can still live a normal and productive life.

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