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Follow-Up Care throughout Your Child's Life

As more children go on to live long lives after a bone marrow or cord blood transplant (also called a BMT), doctors are learning more about their health over the long term. Many children treated with transplant report a good quality of life. However, a transplant can affect your child's health throughout his or her life. You and your child can take steps to improve your child's health and manage any problems that come up after transplant.

Life-long health care for your child

After your child leaves the transplant center, he or she will likely return to the doctor who treated him or her before transplant for follow-up care. It will be important for your child's regular doctor to stay in close contact with the transplant doctor. Your child will receive the best care when you and your child's regular doctor and the transplant doctor work as a team. For many years, your child will return to the transplant center for regular follow-up visits. Transplant doctors will assess your child's progress and check for any possible late effects of transplant. Ask your child's transplant center about their schedule for follow-up visits.

Over time, your child may move on to new doctors for his or her regular health care. Each new doctor needs information about your child's previous treatments and risks of possible late effects. It is a good idea to have copies of treatment summaries to share with doctors (more information below). Even years after transplant, your child's regular doctor can consult by phone with the transplant doctor about questions.

Guidelines for long-term care

For guidelines to help you and your doctor schedule your long-term follow-up care after transplant, see A Guide to Protecting Your Health after Transplant: Recommended Tests and Procedures. The guide includes:

Information about side effects that may occur months or years after transplant
Charts with recommended tests and procedures for your six-month, twelve-month and yearly post-transplant check-ups
Space for recording important information about your post-transplant care
Information to share with your doctors about the tests and procedures you will need after transplant

Download the guide from the NMDP’s research partner, the Center for International Blood and Marrow Transplant Research at www.cibmtr.org/posttransplant or order a printed guide.

Immunizations

After transplant, your child's immune system must fully recover before he or she can get new immunizations. Your child will also need to repeat all previous immunizations. Your child will be ready for immunizations one year after transplant or later, depending on immune function. Your transplant center can guide you on when to begin immunizations for your child.

Healthy choices

Encourage your child to develop a healthy lifestyle. Healthy choices can improve your child's health and quality of life. Unhealthy choices can increase some risks. Healthy choices include:

Eating healthy foods
Getting regular exercise
Getting enough rest
Protecting the skin from the sun — to reduce risks of triggering a common transplant complication called graft-versus-host disease (GVHD) as well as risks of skin cancer
Taking good care of teeth and mouth and going to regular dentist visits — risks of dental problems can be higher after transplant
Going to regular doctor visits
Being aware of specific health risks and how to watch for them

Helping your child take charge

It is important to prepare your child to take charge of his or her health care as he or she reaches adulthood. Your child needs to know details of his or her diagnosis, treatment and health risks. He or she needs to share this information with each new doctor. Some long-term effects might not surface until years after the transplant.

Medical history and treatment summary

A summary of your child's medical history and treatment can be a helpful tool to share with doctors throughout your child's life. It can also help your child manage his or her own health care as an adult. He or she may forget details of treatments received as a child. Your transplant center can provide a medical history and treatment summary. If you have kept your own record of your child's treatments along the way, this will also be helpful. A summary should include your child's specific diagnosis and details of all treatments, including dates, names and doses of radiation, chemotherapy and other medications.

You may also consider getting your child a MedicAlert tag. If an emergency arises when you are not with your child, the MedicAlert emblem would alert a health care team to your child's medical situation. You can learn more at www.medicalert.org.

Resources for your child's doctor

Your child's follow-up care requires specialized knowledge. Your child's regular doctor should consult with your transplant doctor about any questions. The National Marrow Donor Program also offers resources for doctors. You can share information on Patient Care Post-Transplant with your child's doctor or tell the doctor about the Physician Resources section of this Web site.

Contributing editors

K. Scott Baker, M.D., Director, Blood and Marrow Transplant Outpatient Clinic, University of Minnesota BMT Program at Fairview University Medical Center, Minneapolis, Minn.
Nancy J. Bunin, M.D., Director, Blood and Marrow Transplantation, Children’s Hospital of Philadelphia, Philadelphia, Pa.
Eva C. Guinan, M.D., Associate Professor of Pediatrics, Harvard Medical School, Dana-Farber/Children’s Hospital, Boston, Mass.
Mary Jo Kupst, Ph.D., Professor of Pediatrics, Medical College of Wisconsin; Director, Program in Pediatric Psychology, Milwaukee, Wis.