The social skills children develop in school are just as important as the education they receive. But for parents of children with a bleeding disorder, ensuring that they attend school regularly can be difficult and stressful. Often, the fear is that teachers and school staff may not be familiar with how to care for a child with a bleeding disorder such as hemophilia or von Willebrand disease.
Accredo Specialty Pharmacy's trained clinicians offer onsite and in-school education and coaching for school staff who may need to care for a child with a bleeding disorder. Such services are usually welcomed by school leaders and staff because it enables them to better understand the condition and accommodate the child’s needs.
There are a few things parents can do at home to give their child the best chance for regular attendance, including scheduled factor infusions prior to school or activities such as physical education. Prophylactic factor infusions help prevent bleeding, making the school experience much less stressful for parents, teachers and the child.
An abundance of literature specific to school issues and bleeding disorders is available through specialty pharmacies and the National Hemophilia Foundation. Parents also should discuss bleeding disorders with their child’s teachers and other school staff.
Here are a few important facts to discuss with the school and steps to take:
- Encourage the child to regularly attend school, as regular attendance at school is expected and important for the child.
- Discuss frequent absences with the hematologist and social worker, as they may indicate a need to adjust the medical treatment plan.
- Provide a small “medical pack” for use in the school clinic should the child need first aid or prescribed medication.
- Ensure that school staff is aware of the RICE method – rest, ice, compression and elevation – protocol to treat a bleeding episode and provide the necessary products to the school.
- Encourage non-contact physical education, as it is a good way to strengthen muscles and protect joints. The hematologist or nurse can help identify appropriate sports and activities for the child.
- Discuss the areas of serious or life-threatening bleeding from trauma (head, eye, throat, neck, abdomen, spine, hip and groin). Traumas to these areas require the patient to be seen by a physician/hematologist.
- Discuss the signs and symptoms of bleeding such as limping, swelling, inability to use a hand, arm or limb, and unusual complaints or appearance with the school. Bleeds can be internal and may not always be visible.
- Treat the child like any other student, as their diagnosis should not be shared with the class as a “precaution.” Children with bleeding disorders have a right to privacy regarding their condition.
- Make sure the school staff has a “call list” for questions or potential bleeding events.
As with any condition, proactive planning can make a big difference. By making sure the school staff is aware of any special needs, treatment plans and specific steps to take, they will be prepared in the event of a serious bleed.
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