Transitioning CSID Management to a Young Adult

Transitioning is the process of preparing your child with Congenital Sucrase-Isomaltase Deficiency (CSID) for independence in the real world. With age, your child should have the chance to assume increasingly greater degrees of responsibility and independence. Teaching a teen self-management of CSID is crucial. Some self-care training can start during the early teenage years, in preparation for the later teen years when they must start to assume more adult-like responsibilities.

One aspect of transitioning is the process of moving from pediatric healthcare services to adult healthcare services. Adult healthcare services are different from pediatric services. A well-timed transition from pediatric- to adult-oriented healthcare services is specific to each person and ideally occurs between the ages of 18 and 21 years. One of the biggest changes is the amount of input and responsibility individuals have for their own healthcare. As an adult, there are expectations for them to be more involved in making medical decisions.

To transition effectively, teens should start playing a bigger role in managing their medical care. Some tips to help them to get started with this transitional process are:

  • Learn the important information about their condition.
  • Keep track of their medical appointments.
  • Ask questions at medical appointments.
  • Take notes at medical appointments.
  • Modify their diet and follow dietary restrictions regularly.
  • Administer their medication and reorder as needed.
  • Know their medical information, such as CSID diagnosis and drug allergies.

When the time comes to transition from a pediatric to an adult physician, some careful pre-planning and research can make this transition less stressful. Most adult gastroenterologists do not have experience with CSID. Researching physicians well ahead of the transition time pays off in the long run. You may want to consider providing the physician’s office with a medical article or short summary about CSID to be placed in the young adult’s medical file for quick reference by the office staff.

Searching for an adult gastroenterologist and primary care physician with whom your teen feels comfortable may take time. Dealing with a chronic disorder requires a strong relationship with the physician, so it is worth looking and waiting for the physician your teen can work with. It is important that they develop mutual trust and a partnership with their physician. Even with the best planning, unexpected problems may arise in the transition process. This is normal, and parents and caregivers should be available to assist teens in the transition process as needed.