Transitioning to Adult Care Is Critical for Teens With Bleeding Disorders
Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to mix their own clotting factor when they were very young. Hemophilia is just a normal part of their lives.
My oldest son, Julian, is now 25, and I remember taking him to doctors’ appointments and insisting he fill out forms. I would sit by him, answer questions, and try my best to explain insurance basics. He was in sixth grade when we started these lessons.
Julian’s hemophilia journey has been very different from his brother Caeleb’s.
Caeleb is on the cusp of 16, and last week, I insisted he return the phone call to his care coordinator about his shipment of medication and supplies. He looked at me bewildered. I realized that I had been remiss in teaching him the basics of ordering and filling out forms. He panicked, and I had him put the call on speaker. Before the call, I gave Caeleb an idea of what to expect. He did great, and his care coordinator was terrific.
But why have I waited so long with Caeleb when I didn’t with Julian?
Sometimes it’s hard for me to believe the road I’ve traveled with Caeleb and his bleeding disorder. His early years were filled with hospitalizations, an inhibitor that prevented his factor replacement treatment from working, and venous access issues. In addition, an allergy to factor VIII proved extremely difficult, which meant having to use other products to treat bleeds that took a longer time to help him heal.
Once Caeleb’s body began to accept the necessary factor for treatment, infusing daily was a gift, but he had missed a lot of time in school.
Once he started middle school, he worked hard to catch up on both his academics and his social skills. But he struggled, and it didn’t occur to me to teach him how to fill out forms and make calls for his medication and supplies. His journey just took him along a different route from his brother.
In two years, Caeleb will complete high school. I need to make sure he is prepared to be a young person out on his own in college. Not only do I need to teach him how to care for the logistics of having a bleeding disorder, but I also need to work with him on life skills, such as laundry, basic cooking, grocery shopping, cleaning toilets and countertops, and time management.
I tend to assume he knows more than he does, so it’s good to realize that his skills need some help now, instead of when he moves out. I will also help Caeleb understand how to transition from pediatric care to adult care. The hemophilia treatment center is a wonderful resource, and clinicians there can help pediatric patients understand the importance of moving to adult care.
Teaching a teenager about the expectations of adulthood can be overwhelming. I find that incorporating these skills in everyday living is very effective. The National Hemophilia Foundation has a helpful set of transition guidelines to help families raising children with a bleeding disorder. This document is a good place to start.
Hang on, Caeleb. Mom’s boot camp is about to begin.
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