For children with bleeding disorders, unexpected changes to the regular rhythms and routines of daily life can be challenging. Emergency room (ER) visits to treat a bleed, missing school or other activities, getting a new nurse or social worker at the hemophilia treatment center (HTC), or even adjusting to a last-minute change in an infusion schedule can cause anxiety and tension—and not just for the affected child, but for the entire family. Parents and other caregivers do their best to minimize such disruptions of course, but inevitably there will be times when your customary schedule and habits are knocked off track. When this happens, follow these tips to help keep things going as smoothly as possible:
Stay Positive
Children model their behavior on what they see, and will imitate and repeat their parents’ actions and reactions. If you’re stressed and anxious about an unplanned event, such as a trip to the ER, there’s a good chance your child will be, too. Keeping your cool and reassuring children that they can handle whatever they’re dealing with will help make things go a lot smoother.
Stick to the Routine as Much as You Can
The reason routines work is because young children thrive on structure and consistency. So when part of your family’s routine has to change at the last minute, keeping the rest of the routine the same can go a long way toward helping your child feel comfortable. Take infusing, for example. Maybe the timing of an infusion has to change, or another family member must administer the factor. If your child still has the same responsibilities for infusing that they always have—such as getting the clotting factor, collecting infusion supplies and helping log the infusion—that can help him feel more calm and secure.
Be Proactive
Let’s say your child’s nurse is leaving the HTC. As soon as you learn the news, arrange a meeting with the new nurse, and if possible, include the outgoing nurse as well. This not only gives you the opportunity to share any questions or concerns ahead of that first appointment, but it also enables the new nurse to go into that first appointment with a much fuller picture of your child’s temperament, likes and dislikes.
Keep Talking
Whenever something unplanned or unexpected happens, be sure to involve your kids in communications about their care. Children feel more empowered when they are part of the conversation. After the fact, you can talk about what went well or what could have gone better. It’s also good to bring up hypothetical problems (“What would you do if you were to twist your ankle in basketball practice?”), and then talk about the best solutions for different scenarios.
Ask Your HTC for Help
Reach out to the nurses and social workers at your HTC for guidance and suggestions. They can work with you and your child to help develop age-appropriate strategies for handling life’s unexpected and unpredictable moments.