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MDS is rare in children. Like the adult version of MDS, childhood MDS is separated into two categories:
- Primary MDS for cases that have no obvious cause
- Treatment-related and secondary MDS for cases that have an obvious cause
Your child's treatment options depend on whether he or she has primary or treatment-related and secondary MDS.
Refractory cytopenia (RC) is the most common subtype of childhood MDS. About half of all children with MDS are diagnosed with RC. The subtype is difficult to diagnose. Before your doctor can confirm an RC diagnosis, your child must undergo careful physical examinations and repeat bone marrow tests. The doctor also considers your child's medical history.
Treatment-Related and Secondary MDS
Another name for treatment-related and secondary MDS is therapy-related MDS (tMDS). Between 7 percent and 18 percent of childhood cancers are therapy related.
Treatment-related and secondary MDS in children is associated with:
- Prior chemotherapy or radiation therapy. Children who have MDS might have previously received radiation therapy or chemotherapy treatment for another cancer(s).
- Prior acquired aplastic anemia. Children born with bone marrow disorders such as Fanconi anemia, severe congenital neutropenia or Schwachman-Diamond syndrome have a higher risk of developing MDS.
- Familial MDS. Children who have a first-degree relative (mother, father, brothers or sisters) with MDS are at higher risk for the disease.
Children with treatment-related and secondary MDS tend to have less favorable treatment outcomes than children with primary MDS do. Allogeneic stem cell transplantation is an option for patients with a congenital bone marrow failure disorder if the transplant would be the same treatment approach for the disorder.
Childhood MDS Subtypes
Subtypes of primary childhood MDS are based on the World Health Organization's (WHO's) adult MDS classification.
|Refractory cytopenia (RC)||
|Refractory anemia with excess blasts (RAEB)||
RAEB in transformation (RAEB-T)
|All other types||
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.
Maintenance care is important for children with MDS. Your child should visit his or her pediatrician at least once a year for a complete physical exam and any additional needed tests.
Regular doctor visits are encouraged to:
- Enable doctors to assess the full effect of therapy
- Detect and treat disease recurrence
- Identify and manage long-term and late effects of treatment
Your pediatrician should recommend a schedule for having your child's learning skills assessed. If your child appears to be experiencing learning disabilities, special education methods can help.
Coordination between your child's pediatrician and an MDS specialist is important for the best care possible. Some treatment centres offer comprehensive follow-up care clinics for childhood cancer survivors. To find one near you, visit The Pediatric Oncology Resource Center.
Your child may experience some long-term and late effects of treatment.
Researchers are working to improve their understanding of long-term and late effects and to create guidelines for follow-up care. They're also seeking to understand how factors like aging and social and economic status influence long-term and late effects. The Leukemia & Lymphoma Society (LLS) is currently funding an initiative at Children's Hospital of Philadelphia to discover and eliminate the causes of cancer treatment's late effects.
- Download lists of suggested questions to ask your healthcare providers
- Download or order LLS's free information booklets:
- Fertility Facts
- Learning and Living with Cancer: Advocating for Your Child's Educational Needs
- Long Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts
- Choosing a Blood Cancer Specialist or Treatment Center
- Knowing All Your Treatment Options
- About Childhood Blood Cancer
- Long-Term And Late Effects Of Treatment For Childhood Cancer Survivors
- Follow-Up Care for Childhood Cancer Survivors
- Watch and Wait
- Allogeneic Stem Cell Transplantation