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There are many ways you can help children and their families get the care they need.
At Boston Children’s Hospital, we know how difficult a diagnosis of nephrotic syndrome can be, both for your child and for your whole family. Our experts are here to help.
How is nephrotic syndrome treated?
1) Since assessing how well your child responds to treatment is part of the diagnostic process, your child is given a course of steroid therapy to see whether his nephrotic syndrome clears up. While it can take up to eight weeks for the steroids to work, many children respond within a month.
2) If your child doesn’t respond to steroid therapy, that doesn’t necessarily mean that he has focal sclerosis (FSGS). His doctor may order a biopsy to try to learn whether it could be FSGS, and which paths of treatment are likely to be the most beneficial. His doctor will likely also prescribe different medications.
3) If your child’s NS responds to the new medication(s), and his doctors suspect that he has minimal change disease (MCD) his doctors will use the medication to treat the NS until it goes into remission.
4) If your child has FSGS and responds to new medication(s), it’s likely that your child will never be taken off of the medication, since he is considered to be much more likely to relapse.
5) In some children, their FSGS loses its response to therapy. This means that:
Their FSGS may have responded to steroids at first (and doctors may have thought that it was MCD), but then steroids don’t help when a relapse comes on. In this case, your child’s doctor may order a biopsy to look for signs of FSGS.
Medication may appear to keep FSGS under control at first, but lose its effectiveness over time.
If your child’s FSGS progresses to end-stage renal disease, your child may need dialysis and/or a kidney transplantation.
What’s the long-term outlook for children with nephrotic syndrome?
Long-term outlook depends on the child and what’s behind his nephrotic syndrome. While each child is different, there is some data that can help give you an idea:
If your child has minimal change disease:
Under 20 percent—around one in six or seven children—won’t experience another episode (relapse), and be “cured” after their initial treatment with steroids. But most children will relapse. We expect this, and can help you monitor for it and then treat it when it occurs.
Around 30 percent of kids with NS are “frequently relapsing,” meaning that they’ll have three or four more relapses within a year.
Another 30 percent of kids will be “steroid dependent,” meaning that they’ll need to continually use steroids to manage their nephrotic syndrome throughout their lives.
Relapses are especially common for the first few years after the child is diagnosed. If your child experiences a relapse, his doctors will balance his use of steroids to achieve the best results with minimal side effects.
If your child has focal sclerosis:
Up to 20 percent or so will respond to therapy and go into remission.
Around 30 percent of kids have some degree of response to steroids and/or other medication. They may have high blood pressure and some kidney problems, but not reach the point where they need kidney dialysis and/or a transplant.
Around half of kids will not respond to medication and develop end-stage renal disease. These children will need kidney dialysis and/or a kidney transplant.
Around 40-50 percent of children with FSGS who have had a kidney transplant experience FSGS in the new kidney, too. At Children’s, we have a protocol that lowers this number to around 20-25 percent.
How will I know if my child is responding to steroid treatment?
Here at Boston Children’s, we’ll teach you how to test your child’s urine protein levels at home. As your child begins to respond to the steroids, there will be less and less protein in his urine, and we’ll be able to wean him off of steroids.
How will I know if my child is relapsing?
If your child has been doing well but the at-home tests show a protein level of 2+ or more for more than three days in a row, please call your child’s doctor.
While your child is relapsing, make sure that he’s careful with how much salt and fluids he takes in. Once your child has responded to treatment for his relapse, the restrictions on salt and fluid can be eased.
Coping and support
We know how worrying a diagnosis of nephrotic syndrome can be, both for your child and for your whole family. That’s why our physicians are focused on family-centered care: From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs. Here are some of the ways in which we can help:
Patient education: Our nurses will be on hand to walk you through your child’s treatment and help answer any questions you may have—Are my child’s treatments working? What do we do next? They will also reach out to you by phone, continuing the care and support you received while at Boston Children’s.
Parent to parent: Want to talk with someone whose child has been diagnosed with nephrotic syndrome? We may be able to put you in touch with other families who can share their experience.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
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.”