Schoolchildren
Between the ages of 6 and 12 years, schoolchildren begin to have busier schedules and often become more and more involved in school activities, sports, and other extracurricular programs. They learn to establish and maintain relationships with friends and responsible adults who surround them. They also discover their aptitudes and interests and develop their abilities—both physically and mentally.
While safe management of a child's hemophilia is still a foremost concern, parents and families should encourage and support their child's integration into the school setting and other communities. The best choices are made when you have the most information, so talk to your hemophilia care team members about the risks and benefits of different activities. Clear communication with the treatment team as well as school personnel and other caregivers is key to giving schoolchildren with hemophilia a safe, healthy, and happy experience.
Fitting Treatment into Busy Lives
At this period in a child's life, parents, families, and the treatment team should focus on helping a child with hemophilia live a normal life. Together, you can work to establish a treatment plan that meets medical needs while causing minimal disruption to the child's (and family's) day-to-day routines.
By this age, treatment should be getting somewhat easier. The child's veins are more developed and visible, which should make injections less difficult and children less fearful. And at this point most parents have mastered home infusions, which minimizes the need for trips to the hospital or treatment centre.
When Might Extra Infusions Be Needed?
A child's doctor may recommend additional infusions on days when the child will have increased activity and a higher risk of bleeds. These might include physical education days, field trips, and planned sports events, as well as in preparation for medical procedures like surgery or dentistry.
With schoolchildren, the biggest challenges for treatment may be logistical. Bleeding episodes can cause absences from school and other activities. Prophylaxis—factor treatment given on a regular basis to try to prevent bleeding—usually requires infusions 3 to 7 mornings a week, adding yet another element to already-busy school morning schedules. And extra infusions may be necessary in advance of certain activities—so careful coordination with school personnel and activity leaders is critical for treatment planning.
Parents and all other caregivers should maintain thorough bleed records and treatment diaries to help track the child's condition. Meeting and/or speaking regularly with the hemophilia care team allows everyone to work together to evaluate and adjust the treatment on an individual basis.
Educating the School
It is important for parents to educate any other adults responsible for their child about hemophilia. Parents must ensure that the school receives accurate hemophilia information, has all contact information for the comprehensive care team, and understands what to do in case of a bleed. Accurate information will help debunk myths such as "the hemophiliac will bleed to death if they cut themselves," help reassure caregivers, and ensure your child gets the best possible care.
The following are some key educational points you should communicate to school personnel:
- If the child complains of pain, believe them, even if there is nothing to see.
- Difficulty moving a limb normally, or excessive pain with or without moving, is a symptom of bleeding.
- Be aware that a child might try to hide their symptoms to avoid missing an exciting activity.
- Parents should be the first people consulted if school personnel suspect a bleed. School staff should have all the parents' contact information on file (home, work, and cell phone numbers, pager number, etc.).
- The delay between the beginning of a bleed and the treatment must be reduced as much as possible—prompt treatment is crucial.
- Significant trauma to the head, among other injuries, can cause a life-threatening bleed. School officials must not "wait and see"—notify parents and emergency medical staff immediately.
- Basic first aid care can be administered when a bleeding episode happens—remember the key words Rest, Ice, Compression, and Elevation (RICE).
- Treat the child with hemophilia like every other child; avoid doing that could make them feel different or isolated from the other children.
It's natural to have lots of questions about the care and treatment of your or your loved one's schoolchild. You'll find a great deal of useful information on this website, but just remember that for medical advice, always contact your doctor, nurse coordinator, or other Hemophilia Treatment Centre staff member.