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There are many ways you can help children and their families get the care they need.
It's entirely natural that you might be concerned right now about your child's health; a diagnosis of chronic kidney disease can be frightening. But you can rest assured that at Boston Children's Hospital, your child is in good hands. Our physicians are bright, compassionate and committed to focusing on all of your child's needs, not just his condition.
Treatment for stages 1, 2, 3 and 4
If your child is diagnosed in stages 1, 2, or 3 of CKD, she probably won't have many symptoms, but her kidneys won't be functioning the way that they should, which can lead to complications. Here's how we treat these complications:
If your child's kidneys aren't properly regulating the acid levels in her blood, this may result in a condition called acidosis, which doesn't have any symptoms. We can treat acidosis with bicarbonate, an oral medicine that balances the acid levels.
The kidneys regulate the level of calcium and phosphorous (minerals necessary for bones to continue to grow) in your child's body. If they begin to lose the ability to do this, we can supplement those minerals with activated vitamin D, medicines that prevent the absorption of calcium and phosphorous, and regulating her diet.
Your child's blood pressure may start to go up, and if we treat this with blood pressure medication early on, we can minimize the risk of cardiovascular disease as the condition progresses.
If your child's kidneys aren't making erythropoietin (EPO), a hormone that regulates how the body makes red blood cells, she may develop anemia and experience weakness, fatigue and/or have trouble concentrating. To relieve these symptoms, we may recommend EPO be given as a shot at home, usually weekly or every other week. Many symptoms associated with chronic kidney disease are related to anemia, so this treatment has a very good chance of making your child feel better.
Your child's growth rate may be affected. If this happens, we can give her growth hormones. This is given as a shot every night at home.
If your child is in stage 4, her doctors may also take some steps to get her ready for treatment in stage 5. Often this involves a course of dialysis before transplant.
Treatment for stage 5 CKD (end-stage renal disease)
Stage 5 is defined as end-stage renal disease, at which point your child needs to go on dialysis or have a kidney transplant. Both are effective treatments, and our goal is to transplant virtually all of our patients with ESRD. Around 75 percent of children with ESRD go on dialysis before receiving a transplant.
One of the roles of your child's kidneys is to act as a filter for her blood, making sure that it has the right balance of water and minerals. If your child's kidneys are unable to do this, dialysis is a procedure that can do it for her. Dialysis may be given every night at home, or at a hospital or dialysis center three or four times a week.
In some children, including those with the severe form of FSGS or familial hemolytic uremic syndrome (HUS), the disease causes the kidney to fail almost as soon as it is transplanted. In other cases, it may not be a good time for the family to have the child undergo a transplant. The good news is that a kidney transplant is very rarely an emergency, and never absolutely necessary, because dialysis is such an effective treatment.
A kidney transplant is an operation in which the surgeon implants a new kidney from a living or deceased donor.
Coping and support
Dealing with chronic illness can be very difficult, but you are never alone. We understand that it can be very upsetting when your child is diagnosed with CKD, or is progressing through the stages. There are many resources available to help you and your family cope during difficult times. Here are a few to get you started:
Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have —What symptoms might my child have? What do we do next? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has been diagnosed with CKD? 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:
Outside of Children's, the National Kidney Foundation has lots of information on its website. Some links you might find helpful:
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.”