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| Paediatric Nephrotic Syndrome
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How "Kidney Kids" are affected both physically and mentally
Nephrotic Syndrome is a chronic nonspecific kidney disorder that is often first detected in children between two and five years old. While this terrible disease can affect people of any age, it is most commonly seen in young children and affects more boys than girls.
Nephrotic syndrome is uncommon. Only about one in every 50,000 children are diagnosed with the condition each year. It tends to be more common in families with a history of allergies or with an Asian background, but it's not yet known why this is.
It can usually be diagnosed after dipping a chemically sensitive strip into a urine sample. If there are large amounts of protein in a person's urine, the strip will change colour. A blood test showing low levels of protein will confirm the diagnosis. However you can have the disease for some time before any real symptoms are noticed, which is why it is so dangerous. Usually if a child (or adult) complains of any sort of urinary tract infection, doctors will do a simple protein test.
Kidney disease is a huge issue that has epidemic proportions yet not many people really know about it. In fact, more people die of kidney disease than of breast cancer, prostate cancer, suicide and road fatalities put together. And it's a tricky one to diagnose and catch early – 70% of your kidney function can be gone before you even have a symptom.
The kidneys of people with nephrotic syndrome don't work properly, causing large amounts of protein to leak into their urine. This can cause a range of problems, including swelling of body tissues and a greater chance of catching infections. Symptoms can usually be controlled by medication, with steroids often used.
Children with nephrotic syndrome have times when their symptoms are under control (remission), followed by times when symptoms return (relapses). Most, but not all will relapse less frequently as they get older, eventually "growing out of it" by their late teens. Most children with nephrotic syndrome respond well to steroids and aren't at risk of kidney failure.
However, a small number of children have congenital (inherited) nephrotic syndrome and usually do less well. They may eventually have kidney failure and need a kidney transplant. In some cases, when initial treatment doesn't work, the child may need to have a kidney biopsy.
Most children respond well to treatment with the steroid, prednisolone, with the protein often disappearing from their urine and the swelling going down within a few weeks. This period is known as remission. Some however can develop other issues due to taking immune-suppressant drugs that essentially debilitate their immune system.
Juliet Potter, founder of Girl PR and websites Autochic.com.au and Motherdriven.com.au knows how hard this particularly disease is on both the children and their parents.
Her son, Ash, now 15 has suffered from nephrotic syndrome since the age of four. It's a very long process that, like any chronic disease, affects the entire family. And it's not just physical. Having an often "invisible" disease can also lead to more emotional and mental issues.
"One of the things that's frustrating for the "kidney kids" is that they don't get any empathy", says Juliet. "In fact they can even get bullied. Because most are on high doses of steroids and immuno-suppressants they are overweight and are actually teased for being fat. So on top of everything else they have to deal with, they often have terrible self-esteem issues."
"When relapsing, they retain fluid - their kidney doesn't filter or release urine. They can gain 10 kilos in a day, 10 the next day", she explains.
"It's super hard for the parent too, as the kids don't look sick", says Juliet. "It's a slow, long process. If, God forbid, your child has cancer and their hair is falling out and they're wearing a bandana, people see that and offer support and rally to help the families. This simply doesn't happen with kidney kids… It's kind of like a mental/psychological disease; you don't see it, so it doesn't exist."
Main symptoms to look out for
Swelling - usually first noticed around the eyes, then around the lower legs and rest of the body. This is due to the low level of protein in the blood reduces the movement of water from surrounding tissues back into the blood vessels, leading to swelling (oedema).
Infections - Antibodies are a specialised group of proteins in the blood that help fight infection. If your child keeps getting sick, it's worth having the urine test done. Children with nephrotic syndrome and other kidney diseases frequently experience fatigue, poor appetite and weakness.
Urine changes - Occasionally, the high levels of protein being passed into the urine can cause it to become "frothy". Some children with nephrotic syndrome may also pass less urine than usual during relapses.
Blood clots - Important proteins that help prevent the blood from clotting can be passed out in the urine of children with nephrotic syndrome. This can increase their risk of potentially serious blood clots.
If you are worried about yourself or your child, always go to your GP for advice. For more information on Nephrotic Syndrome click here and for more on kidney diseases and support, go to: Kidney Health Australia. |
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