likely the people you will see most often • social workers, who assist with the issues of daily living and can help with adjusting to hemophilia and finding assistance (e.g., insurance, transportation, housing) • physical therapists, who work with your child on activity, exercise, and joint health • orthopedists, who are experts on bones and joints • dentists, who treat tooth and gum problems (There can be dentists at the HTCs who are very familiar with treating children with mouth bleeding problems. The HTC also may work with dentists in the community.) • genetic counselors, who are specially trained to help explain genetic testing, help identify poten- tial carriers, and coordinate safe delivery and testing of newborns. Speaking up for your child in the emergency room (ER) is perhaps one of the more important roles you have as the parent of a child with hemophilia. You must ensure that your child is seen promptly upon arrival. The ER has a process of picking which patients need to be seen the fastest. You must advocate for your child by educating the staff once you arrive. How do you respectfully advocate for your child in the ER? Make your trip to the hospital less stressful with some advance planning. • Visit the emergency department before your child needs to be seen. Many smaller hospitals may not see very many hemophilia patients. • Come prepared to teach the staff. Some will know more than others about hemophilia. Remem- ber that the staff you teach on the day of your advance visit may not be on duty at the time of your emergency visit. • Remind ER staff that nonfactor therapy will affect lab testing. Any clot-based testing (PT, PTT, Factor VIII, and inhibitor test) will be inaccurate. • Ask if they have a policy that allows you to bring factor with you in an unopened box. Some ERs will not allow patients to bring in factor. • When an unscheduled trip to the ER occurs, call your HTC on the way to the hospital. The profes- sionals can help smooth the process, educate the ER staff, and encourage speedy treatment of your child. • If you are going to the hospital, bring the contact information for your HTC team and your most recent clinic notes and recommendations. You should make a list of the things you want to take with you, like a favorite toy, game, or book. Bring water and warmer clothes for your child be- cause staying warm and hydrated will help make finding veins for infusions easier. • Talk with doctors and other healthcare providers about treatment, prevention of bleeding, and what to do in emergencies. • Take advantage of the care teams at the HTCs for education, support, and treatment. The social worker on the team can help with emotional issues as well as financial and transportation pro- blems and other concerns.
10
Powered by FlippingBook