Nephrotic Syndrome - a personal experience
My son was diagnosed with Nephrotic syndrome at the age of 4.5yrs. He had recurrent viral infections which his pediatrician thought was quite normal for his age. Despite following a very healthy diet and good lifestyle he was sick every 4-6weeks. As a mom I knew there is a problem, hence the frequent visits to his doctor and the frustration of not being to prevent it . Prior to his diagnosis he became very ill, had a fever, abdominal upset and lack of appetite. He started getting puffy above his right eye. We visited his pediatrician’s office three times before a diagnosis was made on the tenth day. Three different pediatricians saw him during these visits. He was so swollen his cloths did not fit him. I believe he was spilling protein for a long time, but his body was strong and because of his lifestyle and dietary habits he overcame it until this last time when his body was just too weak.
The diagnosis came as a shock, followed by 5 days of hospitalization and lots of procedures and medications which could have been avoided.
My frustration with the whole experience is that the diagnosis was made too late. The simplest and cheapest test is used to make this diagnosis and it is absolutely mind boggling as to why doctors fail to order this test more often. All you need is a urine sample and a dip stick! An excess loss of protein in the urine is the indication for this diagnosis. Simple yet in any case I read about the diagnosis has been missed and the child ends up in the hospital with diuretics, blood pressure medications, prednisone and running a risk of developing clots, high cholesterol, risk of having a stroke and the list could go on.
My goal is always to prevent. I believe an in an ounce of prevention is better than a pound of cure”. If the test was done after the first sign of puffiness presented then he could have been treated with much less medications. He would not have develop fluid in his lungs, and have his albumin levels fall so low as not to show up on the lab test! Now I have to check his urine every morning with an Albu-stick (specific for protein in the urine). The urine dip stick has other benefits; in case a child is developing diabetes and the symptoms are missed the glucose will show up in the urine. In cases of infection many times a child may not communicate their discomfort or may have minimal symptoms yet the test may show evidence of urinary tract infection so all in all the benefits of the test will out way its minimal cost.
My suggestion to the parents is to ask for a dip stick urine test whenever you see your child is getting sick too often and not recovering well despite the healthy lifestyle and proper diet. This test can be done at home so you may choose to purchase a bottle of dip sticks and test your children at home from time to time. I believe asking for the test and having a diagnosis early is very important and from a cost benefit factor, if a test costs 0.25cents to a maximum of 0.50cents but prevents hospitalization and unnecessary medications then at the end it costs our healthcare much less!
I have included some general information regarding Nephrotic Syndrome below. I welcome any comments you may have or if you would like to share your experiences.
What is the Nephrotic syndrome?
This is an illness where the kidney loses protein in the urine. This causes protein in the blood to drop, and water moves into body tissues, causing swelling (edema). You will see the swelling around the child’s eyes, in the belly, or in the legs. Your child will not go to the bathroom as often as usual and will gain weight with the swelling.
What causes the Nephrotic syndrome?
In the majority or cases, the cause is not known. The National Kidney Foundation has active research programs into causes and treatments of the Nephrotic syndrome. Viral infections can often play a major role.
Who gets it?
Usually, young children between the ages of 1 1/2 and 5. It happens twice as often in boys as girls. However, children of all ages and adults also can get it.
How can you tell if your child has it?
You may see that your child has swelling around the eyes in the morning. You may think that your child has an allergy. Later, the swelling may last all day, and you may see swelling in your child’s ankles, feet and belly. Also, your child may be:
• more tired & more irritable
• eating less
• pale looking
The child may have trouble putting on shoes or buttoning clothes because of swelling.
How is the Nephrotic syndrome treated?
The treatment will try to stop the loss of protein in the urine, and increase the amount of urine. Usually, the doctor will start your child on a drug called prednisone. Most children get better with this drug.