Heading to High School

New school. New friends. New workload. As a caregiver, it can be both exciting and nerve-wracking to see your teen take on the epic highs and lows of high school. The teenage years might come with a whole new set of challenges to face, but for those with cystic fibrosis (CF), the first day of high school may symbolize their next step on the road to independence. Time flies, doesn't it?

Create a routine together

To help your teen manage their time, work with them to create a routine and give them tools (like a planner or a shared digital calendar) to build one themselves. A big step in gaining independence is learning to care for themselves, so make sure your teen continues to prioritize their health and treatments.

Encourage independence

Once your loved one reaches freshman or sophomore year, ease them into more responsibility and help them begin to take care of their health more independently. Consider having them learn the names of their medications, start teaching them to feel comfortable sharing their symptoms with you and their care team, and help them recognize when symptoms get worse and what that can mean for their overall health.

Recommend that your teen play an active role during appointments by:

Asking and answering questions on their own
Knowing the reasons for their yearly checkups and tests
Learning the right food options from their dietitian

Help your teen keep up with their digestive health by:

Reminding them to take their digestive enzymes. Some teens need to take enzymes to help them with digestion and it’s important they don’t miss a dose. If your loved one starts experiencing abdominal pain, constipation, bloating, or other changes to their digestive health, it may be a symptom of malabsorption or even a type of acute intestinal blockage called distal intestinal obstruction syndrome (DIOS). Make sure to bring up these issues with their care team right away.

Be on the lookout for diabetes by:

Knowing which signs and symptoms to watch out for—20% of teens with CF will develop diabetes, which can cause them to lose weight and energy. It may also cause a drop in lung function. Your teen may feel drained without knowing why, feel thirsty all the time, or have to get up to use the bathroom more often. Talk to your care team right away if you or your teen notices any of these symptoms. Even if your teen does not have any of these symptoms, they should be screened once a year for diabetes

By junior and senior year, your loved one will be a pro in their CF care routine. Help them begin transitioning to adult care by:

Having them connect with someone they know who has recently made this transition. It could give your child an experienced person they can talk to and get guidance from
Getting to know the adult center you’re considering. Not all adult centers offer the same exact services, so it’s important to find out what specialists and services are available at each center

Talk about CF

Check in on your loved one’s emotional health and how CF is affecting it

Your loved one’s CF care center may have social workers, mental health counselors, psychologists, and other mental health professionals who can talk to them about their emotional and mental health, as well as ways to cope with the challenges of CF.

Talk about CF

Set your teen up for a successful school year by discussing CF with those who will be involved in their life, such as:

The faculty: Talk to school faculty, such as guidance counselors, deans, and, naturally teachers, about your teen's needs. Help them understand more about CF and any accommodations your teen may need throughout the year, such as extra time for them to eat lunch or allowances for more frequent absences. If your teen feels more comfortable keeping their CF diagnosis to themselves, let the staff know about this preference so that they are able to check on your teen when needed in a discreet manner
The school nurse: Discuss the particulars of CF in case of an emergency, as well as minimizing classroom illnesses and your teen’s risk of getting sick
The teachers: Work with the teacher(s) your loved one will be spending the most time with throughout the day to identify how they can make your child feel more comfortable bringing up their CF-related needs in the classroom. You can also send them this Teacher’s Guide for a primer on CF and what they may need to keep in mind as an educator
Peers and parents: During the teen years, your child’s social life can be packed. Between high school clubs, slumber parties, school projects, and even dating, it’s important that you or your child are able to tell peers and parents about CF. Use this guide to help your conversations. If they are comfortable doing so, encourage your child to get involved in these conversations about CF. It might just help them to feel empowered enough to take on more responsibility