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There are many ways you can help children and their families get the care they need.
Undoubtedly, you were distressed when you learned that your child has a PIDD. That's understandable – no parent wants his or her child to be unwell. But at Boston Children's Hospital, we view the diagnosis as a starting point. Having identified your child's condition, we're able to begin the process of treating your child, so that we may ultimately return your child to good health. There are several treatments and care options to help manage the symptoms and allow your child live a healthy and active life. The most severe forms of PIDD may be cured by hematopoietic stem cell transplantation. However, most children with PIDD do not need this.
The National Institutes of Health recognizes three main stages of treatment for PID:
There are several treatments we may recommend to support and improve the function of your child's immune system, such as:
For some primary immunodeficiency disorders (PIDDs) these therapies can keep children healthy and active for many years. However, none of these therapies can cure the PIDD. The only known cure is hematopoietic stem cell transplantation or gene therapy.
In addition to following the recommendations your doctors give for supportive care, there are steps your family and child can take to maintain the general health of a child with PIDD. Following a healthy diet, including avoiding raw or undercooked foods that may contain bacteria, using filtered or bottled water, avoiding exposure to infection and practicing good personal hygiene will help your child stay healthy.
Hematopoietic stem cell transplantation (HSCT)
Currently, HSCT is the only non-experimental cure available. You may have heard of a bone marrow transplant (BMT), which is a form of HSCT. HSCT is a very complex treatment, and not all children with PID are candidates for this therapy. Children with PIDDswho receive stem cell transplants are treated through Dana-Farber/Children's Hospital Cancer Care's Pediatric Stem Cell Transplantation Program. The combined Dana-Farber Cancer Institute and Boston Children's Hospital transplant team has more than 20 years of experience using stem cell transplantation to treat children with severe PIDDs.
Currently in the experimental phase, gene therapy addresses the problem by using the best donor possible, the patient.
How does gene therapy work?
In addition to providing medical care, we strive to also meet all of your family's emotional and psycho-social needs. We know that unfamiliar places, especially hospitals, often create anxiety and fear for a child. Your child may feel anxiety because of their inherited condition. They may feel they are different than everyone else and want to live a normal life.
We also know this isn't an easy time for parents, who have their own fears and concerns when they learn their child has a PIDD. It may help to remember that there is nothing you could have done to prevent this condition from affecting your child. You or your child may want to seek genetic counseling to determine the risk for any future children, and to understand their options in this regard. In the long term, your child may also want to speak with a genetic counselor before starting his or her own family. Our center has accessible genetic specialists, as well as psychologists to help you navigate challenging decisions.
There's a lot of support available here at Children's for you and your family, and here are some of the ways we can help:
Patient education: From the office visit to pre-op to the recovery room, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have— How long will I be separated from my child during hospitalization? What will treatment be like? 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 treated for PID? We can often put you in touch with other families who have been through similar experiences and can share with you their experience at Children's.
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: Our clinical social workers have helped many other families in your situation. Your social worker 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.
Visit our For Patients and Families page for 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.”