Follow these back-to-school suggestions for your child with a bleeding disorder:
Maintain perspective. Remember that school provides opportunities. “A child with a bleeding disorder should attend school every day like every other child,” says Nancy G. Hatcher, LCSW, a clinical social worker at the Hemophilia and Thrombosis Treatment Center at Valley Children’s Hospital in Madera, California. Kids should participate in the classroom, and in physical education, field trips and other activities that promote peer relationships. “Children shouldn’t worry about feeling different,” she adds.
Talk with staff, and know your rights. When you register your child at school, note that he or she has a bleeding disorder, says Laurel J. Pennick, MSSW, LCSW, a licensed social worker at the Arizona Hemophilia and Thrombosis Center at the University of Arizona Health Sciences Center in Tucson.
Schedule a meeting with your child’s teachers, school nurse or health aide, principal, physical education instructor and others, as needed. Talk about the basics of your child’s bleeding disorder and how to recognize the signs of a bleed (e.g., limping, favoring one arm or swelling), and when to call you. Discuss first aid for simple bleeds, especially rest, ice, compression and elevation, or “RICE." And determine the need for extra time for tests or a set of books at home.
Prepare for sick days and emergencies. School staff should call you if they see signs of a bleed, bruise or other problem. “The main thing that usually happens at school is nosebleeds,” says Pennick. For a serious issue, such as a head injury or a head, neck or large muscle bleed, staff should call you and 911, advises Hatcher.
If you have preferences about how or when to be contacted, advise the school. Also tell school staff in advance which hospitals have bleeding disorder medications so they know in case of emergency,
Develop a plan for absences. “We don’t want children to fall behind,” Pennick says. “It can affect them emotionally.” Find out if your school will send classroom work home or have it available online, so your child can review it at home.
Establish a routine. Budget time for prophylaxis, or “prophy.” “We suggest that you infuse in the morning, ideally before your child goes to school,” says Pennick. That’s because factor is at its highest efficacy during the active portion of the day. You may need an extra 30 to 45 minutes in the morning, so factor this time commitment in, whether you drive your child to school or send him or her on the bus.
At the end of the day, allow time for homework and relaxation. Ensure your child gets enough sleep. Children 6 to 13 years old typically need 9 to 11 hours per night, according to the National Sleep Foundation. Try to stick with a consistent bedtime every night of the week.
Learn to let go. Allow your child to try new classes and new pursuits. Encourage new friendships.
Be open to safe activities and sports. “If a child has severe hemophilia and is on a regular prophy dose schedule, his or her clotting factor levels should be high enough that he or she can participate in all but the most aggressive activities,” says Hatcher. Although soccer can be too physical as kids get older, some kids successfully play tennis and even team sports like volleyball. Just check with your HTC about any recommended restrictions. That way you and your child will have a good school year.