Philosophy of teenage cystic fibrosis care
At the Helen DeVos Children’s Hospital Cystic Fibrosis Care Center, our goal is to provide the best care possible for our patients with CF, including preparing them for adulthood.
As your child begins adolescence, you and your child should start preparing for the transition to adult life. As it does for all adolescents, this transition focuses on independence. For people with CF, this means being able to care for themselves. While the providers at the CF center are always here to help, your child should graduate high school with the ability to manage his/her own care. That should include things like taking medicines, calling for refills and calling the clinic without prompting when sick. We will be discussing these topics further during the transition process. We will all work together to get your child ready one step at a time and make his/her transition to self-care as smooth as possible.
One of the ways we will help your child to take charge of his/her health is having the child meet with his/her providers and nurses independently of his/her parents. At 13 years of age, your child will be asked to complete PFTs and come back to the exam room while his/her parents remain in the waiting room. Your child will discuss his/her current medication regimen, therapies, symptoms and general concerns and have a physical exam. Once your child and the providers have discussed the plan, the nurse will invite the parents into the room to recap as a family with the provider. We understand that this step could be scary for both the child and parents; however, the most important thing to remember is that you, the parents, are always included. We realize that sick visits can be more anxiety provoking; therefore, we allow the parents back initially in that circumstance.
Our goal is to help your child develop the necessary skills to manage his/her CF. This way, your child will be better prepared to move on in all aspects of life and enjoy a happy, healthy independent life. If you have any questions, please contact the office at 616.267.2200 or discuss them with the CF team at your next visit.