Dean Kim, M.D., chief, Transplant Services, at the Children’s Hospital of Michigan at the Detroit Medical Center, says it can be especially challenging for parents to manage all of the issues related to a child who has received a transplant.
April is designated as National Donate Life Month, a good time to review tips that parents and children should be aware of to increase the chances of a successful transplant.
Dr. Kim and United Network for Organ Sharing (UNOS) offer several tips.
A child who has undergone a transplant will have regular doctor visits, blood tests and medicine changes to prevent rejection, infection and other side effects. Parents should be aware of what to expect including:
• understanding that there may be many different types of medications that need to be taken;
• realizing that managing medications is stressful and may create conflicts with your child;
• becoming familiar with the names of the medications, the reason for their use and how they are given;
• telling the transplant team if any of the medications bother the child so they can plan accordingly;
• informing the transplant team if you run out of any of the transplant medications, or if you are not able to afford to pay for these medicines so that the team may assist as needed.
The following tips may be helpful when handling medications for your child:
• Make sure you have enough medication at home and get prescriptions filled early so you don’t run out.
• If your child misses a dose of any of the medications, notify the transplant team coordinator or your transplant physician as soon as possible.
• Because many medicines interact with transplant medicines, never give your child new medications until you discuss them with your transplant team.
Talk with the transplant team about minimizing exposure to infections since there is a decreased ability to fight infection post-transplant.
Energy Level and Physical Activity
After a transplant, a child often feels dramatically better. Parents should talk to the transplant team about gradually increasing physical activity and setting reasonable limits on their child’s play. A physical therapist may also be beneficial in working together with you and your child to develop a program that integrates your child’s needs, goals and activity preferences.
Appetite and Nutrition
Once a child gradually starts feeling better, it can lead to a dramatic improvement in appetite. Because transplant medications may cause weight gain, salt retention, potassium loss, high blood sugar and high blood pressure, it is often helpful to work with a nutritionist to design an appropriate diet plan for your child.
Social readjustment can be a major issue for a child following transplantation. Every effort should be made by both the parents and the transplant team to identify if a child is having problems coping with their changes and fears following transplantation.
Exposure to Sun
Because sensitivity to the sun is one of the more common side effects associated with some transplant medications, it is important to protect your child from exposure to the sun.
It is important that you discuss plans for new pets with your transplant team. In addition, due to the higher risk of infection, it is not recommended for your child to be cleaning pet cages or changing litter boxes.
Due to complex follow-up care, it is important that your family not make any travel plans for the first three to six months after the transplant. If you plan on traveling with your child, please discuss this with the transplant team prior to making trip arrangements.
For further information on transplant resources and services at the Children’s Hospital of Michigan visit http://www.childrensdmc.org/TransplantCenter.