A child's diagnosis of MDS can bring with it feelings of uncertainty for parents and other family members. Suddenly, you're thrust into a fast-paced world of change, worry, fear and concern. You'll need to make treatment decisions while taking the time to comfort your child - and at the same time trying to cope with your own emotions.
Your child's doctor should develop a treatment plan that limits the amount of therapy needed to bring about a remission. Children with MDS may sometimes be treated differently than adults with the disease are. Be sure to ask the doctor about potential side effects and long-term effects when considering treatment options.
The two main types of treatment for childhood MDS are:
- watch and wait
- allogeneic stem cell transplantation
Watch and Wait
Some children need only be monitored with periodic blood tests to check blood cell counts. They may occasionally need blood transfusions to improve blood counts, but their disease can remain stable for months or years. Children with RAEB and RAEB-T subtypes typically need to start treatment soon after diagnosis.
Allogeneic Stem Cell Transplantation
A large proportion of children with the refractory cytopenia subtype (RC) are cured with an allogeneic stem cell transplantation. This treatment cures an estimated 50 percent of children with advanced primary MDS (RAEB and RAEB-T subtypes). Allogeneic transplantation is the only treatment that can cure MDS. Children must have a matched related or unrelated stem cell donor to undergo the procedure.
Children not eligible for transplantation may instead undergo immunosuppressive therapy, using cyclosporine A and antithymocyte globuline. This therapy has been shown to improve blood counts and lead to partial, and sometimes complete, responses. However, researchers are still studying the therapy's long-term effects.
A clinical trial may be an option when it comes to finding the right treatment for your child's MDS. Clinical trials for children, adolescents and young adults with MDS are designed to compare potentially more effective therapy with therapy that's currently accepted as standard. Your child will have access to new or improved therapies under study and not yet on the market. Discuss with your child's doctor the possibility of taking part in a clinical trial, where treatment is administered in a safe, closely monitored environment.
More to Explore
- Coping tips for you, your child and your family
- Understanding the watch-and-wait approach
- Understanding stem cell transplantation
- Understanding clinical trials
- Tips to prevent and manage side effects
- Well-being during treatment
- Getting the proper food and nutrition during treatment
- Download or order The Leukemia & Lymphoma Society's free booklet Blood and Marrow Stem Cell Transplantation