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There are many ways you can help children and their families get the care they need.
The first step in treating your child is forming an accurate and complete diagnosis. The process usually starts when a child goes to his pediatrician’s office or even to an emergency room because his body is suddenly very swollen. Since that’s a well-known sign of nephrotic syndrome, your child’s doctors will perform diagnostic tests to check for high levels of protein in his urine and low levels of protein in his blood.
Your child’s doctors will also examine his urine under a microscope for signs of kidney inflammation. If they don’t see a lot of kidney inflammation, there’s a good chance that he has minimal change disease.
Doctors will most likely test your child for tuberculosis (TB) because steroids (a common treatment for NS) can reactivate TB, and make it spread throughout your child’s body.
Within a few days of diagnosis, your child will most likely start on a course of steroid treatment. Many children are treated for about eight weeks, although some respond much more quickly—to see if they’ll respond to the steroids. If your child hasn’t responded to the steroids, his doctors may order a biopsy to check to see if the nephrotic syndrome may be caused by focal sclerosis (FSGS).
It’s important to remember that the doctor will be looking at very small amounts of tissue to examine the tiny filtering units. He or she may only be able to see 20 to 30 filtering units. Since in FSGS, not all of the filtering units are affected, it may look like a child doesn’t have FSGS, simply because the biopsy only picked up filtering units that aren’t affected. If your child’s doctor suspects that your child may have FSGS, he or she may ask for additional biopsies to make sure that your child is getting the proper treatment.
Your child’s doctor may also order a biopsy if your child is experiencing bad side effects from steroid therapy. The biopsy can provide information about which medicines may be more helpful.
After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.
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.”