A new school year can bring a range of emotions for children and teenagers living with pulmonary hypertension. While some students may be excited to return and connect with their peers, others might be worried about changes to their routines or managing their symptoms.
Streamlining communication and ensuring school staff have accurate information are essential to making sure your child is well supported. This includes creating plans for an emergency, supplying backup medical supplies to the nurse’s office and sharing information about PH with educators. Use these tips to help guide your school year preparations.
Share information about PH
Nidhy Varghese, a pediatric pulmonologist and PHA Scientific Leadership Council member, recommends coordinating with your child’s medical team to determine which school setting is best: in-person or virtual, and full-day or half-day.
Before classes begin, Varghese encourages parents to share information with teachers and school staff so they understand what a child with PH needs to succeed and what they must avoid for safety.
“With early and thorough preparation, surprises can be avoided and everything can be in place to ensure a smooth school experience,” Varghese said.
These conversations can be supported by detailed information from the child’s medical care team. PHA has various resources families can use to help communicate this information.
Debra Hines-Bruce, resource and inclusion coordinator and PHA board member, suggests families provide the school nurse with a folder that includes emergency contacts, current medications, instructions for an emergency action plan, physician contact information and copies of accommodation documents.
“Remember, many educators have never worked with a student with PH, so clear communication is essential,” Hines-Bruce said.
Rachel Hopper, a pediatric cardiologist at Stanford Children’s Hospital, says there should also be clear instructions for what to do if a medication is missed or a device malfunctions.
“If your child uses a medicine pump, make sure there are clear instructions for who to call if the pump alarms or if a subcutaneous catheter gets dislodged,” Hopper said.
Encourage your child to focus on their strengths and remind them that asking for help is a sign of strength.
Accommodations and self-advocacy skills
Your child’s PH care team can help you communicate activity restrictions and specific warning signs indicating your child may need emergency services. This information is important to include in any accommodation plans, such as a Section 504 plan or an Individualized Education Program.
These legal documents can help ensure your child receives any necessary accommodations, including alternative activities during physical education class or permission to carry a water bottle.
Hines-Bruce recommends helping your child understand their condition in an age-appropriate way so they can begin developing self-advocacy skills.
“Encourage your child to focus on their strengths and remind them that asking for help is a sign of strength,” Hines-Bruce said.
Adjusting to a new routine
In the few weeks before school starts, gradually adjust your child’s sleep and wake times to match the school schedule. It may also be helpful to practice the morning routine, including taking medications, getting ready and eating breakfast, so you know how much time is needed.
If medication schedules need to be adjusted, Michelle Ogawa, a nurse practitioner at Stanford Children’s Hospital, recommends speaking with your child’s care team about how to do so safely.
“Ideally, medication schedules should be adjusted to minimize disruption during the school day. For example, adjusting the midday sildenafil (Revatio) dose or taking a diuretic like furosemide after school to avoid class time disruptions,” Ogawa said.
If your child needs to take medications while at school, work with the school nurse to develop a plan for medication storage and administration. Ogawa also recommends providing backup medications and extra batteries or chargers for medical equipment. For children on oxygen, a pulse oximeter and an extra oxygen tank or concentrator might also be useful.
Packing for health and hydration
Most children benefit from a healthy, nutritious diet that provides steady energy throughout the day. While there is no specific PH diet, it is generally recommended that children eat a diet rich in fruits, vegetables, whole grains, lean proteins and low-fat dairy.
Hopper suggests staying hydrated and eating school-friendly snacks such as:
- Fresh fruit with cheese or yogurt
- Fruit smoothies or protein shakes
- Hummus with whole grain crackers or vegetables
- Nut butter on whole-grain bread or apple slices
- Trail mix
“A reusable water bottle can be a great way to ensure your child stays hydrated during the day,” Hopper said. “Make sure your child has permission to drink water as needed, especially during warmer weather.”
PHA School Resource Guide
Use PHA’s templates and letters to educate your school staff about pulmonary hypertension, create a medication and activity list for the school nurse and prepare emergency information.
Learn more